This blog is on topics of interest to early career professionals who work with people with disabilities. Blog contributors have diverse perspectives on leadership, professional development, and success in changing systems to better serve people with disabilities and their families. For more information on Early Career Professionals, check out the website: www.aucd.org/ecp

24 August, 2011

Sometimes You Just Have to Close Your Eyes and Jump

When I was asked to write this piece, I wondered what I had to offer early career professionals – I am still one, I think. Or at least I am in Part Two of my career. Regardless, here’s my story along with my two cents.

I’ll start with my story…In the early 2000s, I was working at a community-based organization in the western suburbs of Chicago that provides supports and services to individuals with intellectual and developmental disabilities. My boss at the time, David, initiated our organization’s involvement in the Illinois Direct Support Professional Workforce Initiative, a three-year systems change project funded by the Illinois Council on Developmental Disabilities involving a partnership between the University of Minnesota’s Institute on Community Integration, the Institute on Disability and Human Development (IDHD) at the University of Chicago (UIC), and Human Services Research Institute (HSRI). David approached me and told me that there was a meeting at the UIC he wanted me to attend with our human resources manager. I was wary of being involved, mainly because I didn’t know what it was. I asked, “Do I have to?” to which he answered, “Yes”. I didn’t know it then, but my life was about to change drastically. (Thank you, David).


After that first meeting with what turned out to be the Steering Committee, I continued to be involved in the project and meet a number of highly respected individuals advocating on behalf of themselves as well as persons with intellectual and developmental disabilities (IDD) and their support staff. It was during this time that I learned about the Masters in Disability and Human Development in the Department of Disability and Human Development at IDHD. I had no idea such a program existed. I had been working with people with IDD for nearly a decade in roles from direct support professional, to QMRP, to Director of Quality Assurance and Training, but did not know that there was a related academic degree. I had been giving serious thought to graduate school but hadn’t found the right program. I spoke with one of the IDHD staff working on the project, Mary Kay Rizzolo (who also happened to be the Associate Director of the UCEDD), about the Masters program and she encouraged me to apply. I also happened to hear Glenn Fujiura (Director of the Masters program at the time) speak at a conference and approached him with questions. He too encouraged me to apply. Luckily, heeding the advice of both Glenn and Mary Kay, I applied, was accepted and began the Masters program in August of 2006.

And so, I was enrolled full time in the Masters program and working full time between my job at the same agency and the graduate assistantship and loving every minute of it. Two months in, I knew that I wanted to apply to the PhD program in Disability Studies – I had been bitten by the academic bug. As time passed, I eventually left my organization for a position at IDHD which was split between the UCEDD and the LEND. I completed my Masters in July of 2008 and began the PhD program in August of that same year.

IDHD is the University Center for Excellence in Developmental Disabilities (UCEDD) in Illinois. One of the perks of my position at IDHD, was the opportunity to attend AUCD’s annual conference. It was during one of these conferences that I met Kim Musheno, AUCD’s Director of Legislative Affairs, and was able to accompany her to Senator Dick Durbin’s office to educate his staff about the Combating Autism Act and its impact on the Illinois LEND. Up until this point, I had an academic interest in policy in terms of systems change, but this experience lit something in me. I really enjoyed educating legislative staff about something I cared about and I was motivated to do more of it. Tamar Heller, Director of IDHD, suggested I apply to be the AUCD Fellow in Disability Policy.

While the idea of the fellowship was very exciting, I proceeded with caution. After all, I was a PhD student, a wife, a daughter, a homeowner and employee. If I applied, what if I was chosen? Where would I live? Would my husband come with me? Would I have a job to come back to in Illinois? How would I work on my dissertation? My husband was incredibly supportive and encouraged me to apply. After all, he said, the worst thing that could happen is I wouldn’t be accepted. And so, I closed my eyes and jumped and landed in Washington, DC. (If you are wondering, I live with a college friend and her family, no my husband did not come with me and yes, it appears that I will have a job to go back to in Illinois. I have taken the year off from academics and most importantly, my husband is still supportive).

And so here’s the part where I offer my two cents. People have asked me, “Do you think it will be worth it?” Without hesitation I can answer, “It already is”. Despite being away from my husband, our dogs, our house, my family, friends, colleagues and everything familiar, this has been a time of tremendous personal and professional growth for me. I came here for one main reason: to learn advocacy strategies. In the course of my academic studies, I’ve studied interest groups in terms of the role they play in politics. Being here in DC, I’ve been able to experience first hand the role of advocacy in the political process. I’ve learned about coalition and relationship building and how groups with similar interests can come together to work toward a common purpose. Most importantly, I’ve taken a peak under the hood of democracy and learned that it can move painfully slow but I am more thankful for it and the people (and discussions) that make it possible. I feel prepared to return to Illinois with a renewed sense of purpose, some new gadgets in my toolbox, additional professional connections and an appreciation for the work of advocacy organizations at the national level.

Like I said earlier, sometimes you have to close your eyes and jump. I am so glad I did.

25 July, 2011

Why do we do what we do?

Why do we do what we do? This question was posed during closing remarks by Dr. Michael Fox from the National Center on Birth Defects and Developmental Disabilities at the 2011 Disability and Health Partners Meeting. Gathered in the room were professionals, both seasoned and new, who share the common mission of promoting health and preventing secondary diseases for people with disabilities. Through their daily work, the different professionals in the room encounter the inequalities experienced by people with disabilities. Each person has experienced different things that impact the way they see life and the passions they have. These passions can provide powerful personal and professional guidance.

As a reminder of why we do what we do, look back to an experience that has put something into perspective for you. In college I worked for the Citizen Advocacy Program, a program with The Arc that helps adults with intellectual and developmental disabilities gain access to services to live more independently. I helped people first identify medical providers that would take their insurance, then provided any support needed during their medical appointments. Seeing the difficulties many adults had in finding providers that would serve them was an extremely eye opening experience for me.

I am now very aware of some of the barriers that people with disabilities face when trying to receive health care services. In one instance, I brought a woman who had Cerebral Palsy to her consultation so she could learn more about the surgery she was going to have. Even after I insisted several times that the doctor speak directly with her, he continued to ignore her and act as if I was the only person in the room. Instead of explaining the procedure, he assumed that neither of us was capable of understanding it, so he handed me a black and white diagram of a kidney with no explanation. When discussing after care procedures, I could see his forehead scrunch when he asked her repeatedly, “You really live independently in the community?”

My experiences helping adults with disabilities gain access to the services they rightfully deserve made me passionate about improving access to care. Seeing firsthand inequality and barriers has reaffirmed to me the need for work in this area. I share this understanding with many professionals in my field that strive to make healthy lifestyles possible through improved access. Passions can drive the work that you do and make the work you do worthwhile.

Articulating your passions is important.

Be proud of and highlight the work you have done, as it contributes greatly to who you are as an early career professional today. Look at what you are passionate about and how that has contributed to your accomplishments. As a recent graduate, I realize it is not only your education that is important but your passions and interests. Your passions drive the work you do and makes what you do valuable to others.

Networking can help you find others that share your passions.

Networking with people in the field is extremely beneficial; it can lead to personal and professional growth. In my first semester of graduate school we had an assignment (I thought was silly at the time) to interview three people in leadership positions with similar interests or with careers we admired. This assignment forced me to reach out to leaders in the field, which can be an extremely valuable exercise even without a formal assignment. Two of the people I decided to interview worked at the University of Delaware where I was studying and ended up being my academic and professional mentors. While in graduate school, I frequently picked their brains for ways to use my degree and passions to benefit people with disabilities. They were excited to have a student seek advice on becoming part of their field and who shared their passions and interests, which opened up doors for me for future opportunities.

Passion can help you find success.

If you take the time to talk to leaders in the field that share your passion, you will see that they want you to succeed and help you find a place within the field to use your passion and knowledge. Finding a job and supportive work environment where you can share those passions can be very rewarding and is certainly something worth searching for. I encourage all young professionals to reflect often on what it is you are passionate about, and why you do what you do to maintain a clear vision for your future.

11 July, 2011

"Change the World" by Kati M. Seymour

How do you change the world? It is not quick or easy, but it can be done. It doesn’t take a grand gesture or lots of money. All you have to do is care. Care enough to correct the injustices you see. Dr. Martin Luther King, Jr. stated, “Injustice anywhere is a threat to justice everywhere.” Stop bullying. Listen without judgments. Be color blind. According to St. Thomas Moore, we are all part of one race, the Human race.

Let go of assumptions. Take the time to look and truly see the invisible populations. Be present. Be patient. Don’t worry about transference. Choose always to do the something that you can do. Use your innate natural compassion. Have high expectations. Care enough to give your best.

These suggestions work. It’s awe-inspiring to see people’s perceptions change and a world of opportunity unfold. None of this costs a dime; it just takes time.
But, I’m only one person; can I really change the world? Rosa Parks, Ed Roberts, Ruby Bridges, Ron Clark, were all simply ordinary people who cared. Their simple acts of caring set in motion a flood of positivity that we all benefit from today.
If a star jumped in the sea it might swim. If a fish jumped into the sky, it might fly. Nobody knows what is possible until they try. The only way we fail at changing the world is if we fail to try.

I want to encourage you to pursue your dreams whatever they may be. For those of you who deal with challenges, please do me a favor and eliminate the word “can’t” from your vocabulary. Just because it has not been done does not mean it cannot be done. Anything is possible.