To Lead, You Must Follow

Interviews on Self-Determination, Disability Inclusion and Creating Space for New Leaders

By Derek Shields, Director of the National Disability Mentoring Coalition and President of ForwardWorks Consulting

In November 2018, I was invited to facilitate a workshop at the California Transition Institute held in Anaheim, CA. The Institute is coordinated by the California Transition Alliance, a 501(c)(3) non-profit organization established in 2001 that is now focused on advocacy for secondary transition for youth with disabilities. The Alliance continues to focus on programs that support and sustain transition efforts in California, and they host the Institute to bring practitioners together to help build the self-advocacy and self-determination movement for this generation of Californians with disabilities.

As a first-time attendee, my initial reaction was to the sheer size of the conference. With over 1,000 attendees, California is staffed up and preparing its cross-disability systems to fully support self-advocacy, self-determination and transition to employment and full community inclusion. It was clear to me that it wasn’t about when — the future is happening even if it’s going to be improvised by informed adult allies including educators and parents needed to make real and full inclusion possible. If you sense an employment demand wave is coming, the Institute was a place to visualize what the needed workforce looks like. I settled in for the opening session along with my fellow Lights! Camera! Access! colleagues who were also presenting on disability inclusion in media to support the growing career exploration network that was onsite to collaborate with the Institute.

Each plenary session centered a young person with a disability describing their studies, hobbies and career interests. This was intentionally done by Sue Sawyer and Liz Zastrow, two leaders of the Alliance and Institute and the individuals who invited me to participate at the event. Young adult voices with intellectual and Developmental Disabilities (IDD) were front and center, a constant and a refreshing one at that. These young folks were thoughtful, organized and motivated — and at times quite humorous. This was exciting, as I knew these individuals were going to take part in the Youth Strand, a Youth-Lead Workshop on Self-Determination. My role at the conference was to help wrap up the Youth Strand with a session on Networking to Achieve Your Career Objectives. And I was right to be excited because the Youth Strand was fantastic and what was about to happen would end up being a transforming highlight of my career.

Self-Determination Training

The Youth Strand was led and run by Kevin Fortunato and Chris Coulston, both leaders with disabilities who had successfully transitioned from high school to college to work. Kevin and Chris — both great self-determination advocates in their own right — led the youth attendees who came from across the state through a self-determination model that includes the below outcomes:

Self Determination:

· You have to see it to believe it’s possible.

· It’s the foundation that makes things happen in your life!

· It doesn’t mean doing everything yourself, but to know yourself and know how to ask for help.

· Don’t leave high school without it!

· It’s not yours to keep but pass it on to others!

Picture 1: Kevin and Chris leading the Self-Determination Training with young adults and allies and advocates in attendance
Picture 1: Kevin and Chris leading the Self-Determination Training with young adults and allies and advocates in attendance

This was a bit of a reunion, as I met Kevin and Chris at one of the Lights! Camera! Access! Washington, DC Career Exploration Summit two years prior. This summer I had an opportunity to ask Kevin and Chris a few questions regarding their reason for providing the November 2018 Institute training and mindset in helping others; here’s the exchange:

Derek: Kevin and Chris, thanks for the opportunity to join your workshops last
November. I wanted to ask you a few questions today about that experience and appreciate your time. First, please explain why you got involved in self-determination, what’s your transition story?

Kevin: I have Chris to thank for my transition story! Chris had a different perspective than the adults who were working with me. He understood what I was going through and he shared his message: You are not your disability; you are so much more! Seeing Chris go after his own dreams gave me the courage and motivation to pursue my own dreams. If he can do it, I can do it!

I changed school programs and began working to become a preschool teacher assistant. I feel like I’m a new person. My whole world has changed. I know that life is not just one straight road. Everybody goes through many transitions. There are bumps, but there is help. I’m not afraid, I’m in control and I’m committed. Everyone is special and unique. Even though a person might have a disability, they want to be seen for what they are capable of doing. You will have hurdles along the way, but self-determination will help you be in the driver seat of your life.

“You will have hurdles along the way, but self-determination will help you be in the driver seat of your life.”

Chris: I attended my first transition conference when I was in 7th grade and saw five 9th graders who knew their goals, strengths, interests and what they needed to be successful. Once I saw it in them, I wanted it too and I took the steps to live and learn self-determination every day.

Derek: Congratulations, it’s awesome to know of your successes and experience your delight in self-sufficiency and independence. When you were in California for the Training Institute Youth Strand, can you share what you found to be the most meaningful part of the sessions?

Kevin: I think being able to make a huge impact on all the other youth by sharing my story so others with disabilities can see that the focus should be all about what you can do and designing the life you want to live. Watching Zachary change mid-sentence the next day after our workshop was proof that our message was heard loud and clear!

Chris: There are two things that stick out to me the most. In one of our activities, each student shared their strengths.

Kody said, “I don’t have any strengths.” Wrong answer! After Kevin and I helped him, he had a list of strengths that was longer than his arm! Kody made the shift that transition was all about what you CAN do!

The second standout moment is what Kevin described. The shift in Zachary when he introduced the keynote the day after the youth strand! In front
of 1,000 people, he proclaimed transition is not about what I can’t do, but my exceptionalities and my ability! Like Kody, Zachary has a ton of them!

Derek: That’s really fantastic how you helped Kody, Zachary and the other youth! I was able to sit in for your training sessions and recall the learning that was happening. I especially liked the training on how to have youth-led Individual Education Plan (IEP) meetings, and how to use those meetings as a springboard to keep your own voice in the lead for future meetings and planning. What is it that you liked best when you took control of your meetings?

Kevin: I felt independent, and in charge of what I wanted to have happen. The IEP meetings allowed me to practice self-determination skills to ensure that my transition journey focused on what I wanted; not what others decided. It feels very powerful to have a voice!

“The IEP meetings allowed me to practice self-determination skills to ensure that my transition journey focused on what I wanted; not what others decided. It feels very powerful to have a voice!”

Chris: Those meetings are about me, so why wouldn’t I lead? Do you know the most important reason why you should take every opportunity to lead your IEP meeting? …..it’s the perfect place to practice for when you start job interviewing. You have to be comfortable talking about yourself in an adult world. You have to learn how to prepare for those interviews because it doesn’t happen overnight. As Kevin and I say when we present, Carpe Diem! Seize the day — take the opportunity and start leading.

Derek: Knowing that you could do it and then your desire to share it with others — to pass the self-determination baton to others — is a real credit to you as leaders. Can you explain how the “pass the baton idea” was started? Where did you two get your batons from? And how did you ask the youth strand attendees to pass the baton onto others when they went back home so self-determination can continue to grow through youth leaders?

Kevin: Well, I got my baton from Chris. He was the one who showed me what self-determination is all about. Self-determination is my oxygen; I use these skills every day! Chris also shared that self-determination isn’t my gift to keep. I now have a responsibility to share this gift with others. Having Chris pass the baton to me was much more of an impact as a fellow youth, someone who has gone through some of the same struggles and can relate to my situation versus from a parent or adult. Now we are on a mission to share this with other students.

“Self-determination is my oxygen; I use these skills every day!”

Chris: (laughing) I can’t take credit for this idea because it was my mom who actually passed the baton. In the beginning, she was the advocate for me, but once I learned the skills to do it myself, she passed the power to me. I thought it was a crazy idea at first, but it gave our audiences a concrete example of the shift once I, or any student was informed. I passed it to Kevin once he was informed about self-determination. Now Kevin and I together teach self-determination and pass it on to other students and adult allies. Every student wants this!

Derek: Kevin and Chris, thank you for sharing your thoughts. More importantly, the workshop you conducted was something that I will never forget. Thanks for having me in the room and involved, I hope we can work together again. To wrap-up, I wanted to ask you if you had any other advice for youth or for caring adults who might read this article?

Kevin: I think a lot of parents, teachers and adults have a mindset that their students are just about their deficits, they get stuck on the diagnosis or label. We are so much more than our challenges. We have strengths, interests, exceptionalities just like any other human being. If you only look at the negative, that won’t serve you any good. You have to go look for the strengths, what they can do, what they are naturally good at and your outcome is going to be so much better!

Chris: Know thyself! Take inventory on what you are good at, what do you like to do, find good people who are just like you and willing to teach new things! Lead your IEP meeting and show up at your parent student teacher conferences. Transition is all about what you can do!

Networking for Disability Inclusion

To wrap-up the Youth Strand, one of the Institute’s Keynote Speakers, RJ Mitte, the well-known actor of Breaking Bad fame, was joining me to conduct a workshop on the importance of networking. I was pleased that RJ was interested in partnering to conduct the workshop and we had a meeting before the event to map out our content and approach. Organized through Lights! Camera! Access!, we were using a model from our Career Exploration Summit workshops that I had been conducting across the country for the past three years. Basically, I was going to interview RJ and we would have an exchange with the participating young adults in the Youth Strand about the networking content I developed in other sessions.

Earlier in the day, RJ had presented the keynote address to the over 1,000 attendees about his life journey, being an actor with a disability, and provided lessons learned on being positive and working to remove barriers to collectively enhance inclusion for all. To start that keynote session, a young man, Sean Keilberg-Tucker, welcomed the audience and told his story. Remember how each session started with a Youth Strand participant? This was Sean’s turn. Sean lives in California and had the opportunity to be the person to introduce RJ Mitte to the stage. Not a bad role, right? It was a fun exchange as they shook hands before RJ started his remarks. Little did we know what would happen just a few short hours later.

As RJ and I started to set up the workshop, everything was in order. We had a PowerPoint slide deck projected on a large screen and our technology was behaving. The first version of workbook I created with the help of over 100 colleagues, Nobody Taught Me How to Network, had been distributed to the Youth Strand participants, totaling about 25 individuals. The attendees were back from break after a day and half of self-determination training. These young adults were fired up on leadership, how to take control and how take charge. And then it happened!

Sean stood up, came to the front of the room between RJ and I, smiled broadly as he rooted himself at the podium with the laptop. Sean had decided he was going to be part of the team delivering the workshop on networking!! Double exclamation point. Period.

Now at this point I paused, looked at RJ who appeared to be wondering what was happening, and collectively we connected the dots and began. It was at this point and forever forward that I will understand and support a mantra to propel and support self-determination:

those who lead must follow

Now our team was three: Sean, RJ and Derek. (Loving the third person here!) And we were soon to learn how much better for it. Sean did the PowerPoint operations, Derek navigated the content to meet the learning objectives, and RJ provided his valuable lessons from life and career experiences in networking. This got us solidly out of the gate but as we quickly learned, we wanted more, and we knew there was more to be harvested from the experience.

Naturally, we came to a point when an opportunity arose to connect self-determination skills and learnings to networking, and Sean was well-positioned to lead a discussion on what was learned and how to return to each community and build a self-determination network. This was how he was going to ‘pass the baton’ to others. Networking and self-determination were in fact tied together and by including Sean as a lead workshop panelist we had demonstrated — without a net — how it could happen and immediately make the experience better and the content richer. Our objectives were playing out in “live time.”

Picture 2 RJ, Sean and Derek working together during the session.
Picture 2 RJ, Sean and Derek working together during the session.

While this story is written from my perspective, it’s really not about me, really never was and never should be. I’m fortunate to be involved and am pleased to serve as a partner and ally — but this story is about Kevin, Chris, RJ, and most importantly, Sean. It’s about how a network brought them together at a conference for each to share and learn. Each of their separate networks and pathways brought them together for this moment and I had a front row seat to discover what happens when mindful, caring adults provide space and opportunities for others. Earlier this year I interviewed Sean about the experience; below captures our exchange.

Derek: Sean, it’s great to be together again! [We had connected through Zoom, a video teleconference meeting platform.] How are you?

Sean: I’m good and it’s good to talk.

Derek: Have you ever been on a video meeting before?

Sean: No, but this is cool! [As Derek showed Sean the view in Maryland while Sean was in California at an office desk in a school faculty area.]

Derek: Ok, as you know, we agreed to talk about our workshop in November at the conference. Are you still wanting to do that?

Sean: Yes, I am ready…it’s good by me, man!

Derek: What do you most remember about the workshop?

Sean: I remember learning about self-determination and that after I learned it I had to pass it onto others. I was taught how to speak up for myself. I also liked using the ball, we threw a ball around the room with colors on it and then the person who caught it would have to answer a question, like “Why should I hire you?” or “What are your life goals?” It was fun and everyone had a chance to talk.

“I was taught how to speak up for myself.”

Derek: Have you used the self-determination skills that Kevin and Chris taught you when we were with them at the conference? Do you remember Kevin and Chris?

Sean: Yes, I remember them. They passed the baton to me. Yes, I went back home and we worked at my school to teach more students about self-determination. I passed the baton to 65 students back home!

Derek: That is really awesome, congratulations on your success and keeping the self-determination momentum alive. What else do you remember about the workshop? Do you recall your role or job during the workshop?

Sean: Yes, I did the PowerPoint and helped answer the questions about networking. I also talked with RJ about acting.

Derek: Right! And what did you learn from doing those things; about being a presenter?

Sean: That I could do it. That I could talk and share.

Derek: That’s awesome. RJ and I liked working with you, too. You made the session more fun and more real, more authentic. One of the things I remember was your smile, you seemed happy to be involved. How did it make you feel?

Sean: I was happy! I was able to help, it was good.

Derek: Sean, what do you think you can do now that you have the experience as a presenter. You introduced RJ in front of over 1,000 people and then helped lead a workshop for a roomful of people. What do you think about that?

Sean: I think it’s great, I know I can do it now. I can do it again, too. I did it at my school, too. I helped others learn and will keep doing it.

“I know I can do it now. I can do it again, too. I did it at my school, too. I helped others learn and will keep doing it.”

Derek: Sean, thanks for your leadership. Thanks for using your self-determination skills to join RJ and me and help show how it’s done. Take charge, take the space — and your supporters will make way for you to lead.

Before the great disability rights leader, Justin Dart, Jr. died, he passed the baton to all of us with the words, “Lead On! You have the power to live your dream.”

So I say to you Sean, Lead On!

Picture 3 Sean and Derek take a quick selfie during the session.
Picture 3 Sean and Derek take a quick selfie during the session.

Changing the Narrative

In August 2019, I was able to reach out to RJ Mitte and interview him about his experience at the conference and about the workshop itself. Below are highlights of the interview.

Derek: RJ, thanks for joining us at the California Transition Institute and being part of the Youth Strand. Your personal attention to the community is clearly part of your core values — what drives you to be involved?

RJ: For me disability is a strength, not a weakness or illness. It gives me another layer of things I can experience and give that knowledge to others, to allow themselves to be seen and represented. This is an essential core value of mine and I want to share this with young people with disabilities and the professionals that support them in education and transition to careers.

Derek: When we were in the workshop and Sean approached the front of the room and decided to be part of the panel, what did you think of Sean’s choice?

RJ: For a minute or so I wondered if I had missed that Sean was part of our panel. But then I got it. Sean had been in the Youth Strand and was embracing the very core of the self-determination training he had received over the past two days. It was surprising at first but at the same time made sense. And it turned out that Sean’s participation elevated the content in the session along with the learning to a higher and more meaningful level.

“…Sean’s participation elevated the content in the session along with the learning to a higher and more meaningful level.”

Derek: Agreed, sometimes the magic comes from having the right ingredients but not necessarily scripting each part, similar to improvisation. Recognizing the importance of supporting young people and giving them the space to lead, do you have any specific recommendations to share? Any resources or suggestions to help us all support the work to change the narrative towards inclusion in our communities?

RJ: My recommendation is to get experience in spaces where it’s okay to try as much as possible. Find supportive adults who are willing to let you develop leadership and other important skills through practice — creating a project schedule, organizing an event, presenting to an audience, the opportunities are endless to join in.

“My recommendation is to get experience in spaces where it’s okay to try as much as possible. Find supportive adults who are willing to let you develop leadership and other important skills through practice….”

For example, Lights! Camera! Access! Career Exploration Summits, Inclusion
Films Workshops, and also the Easterseals Disability Film Challenge, an event that gives filmmakers — with and without disabilities — the opportunity to collaborate to tell unique stories that showcase disability in its many forms.

The film challenge is a weekend-long filmmaking contest, open to all, that provides a platform for new voices in the entertainment industry. I like the Challenge because it’s open to filmmakers and also to volunteer cast and crew and people with disabilities are encouraged to participate.

This is one unique way to get involved, connect with others, and gain experience. And make sure you step out of your comfort zone and try new things — try leading the way. You will create a better experience for us all and we will appreciate your participation and ideas.

Derek: RJ, thanks for making time, for being a great role model for us all, and for your support of Kevin, Chris and Sean. And congratulations on the Inclusion Films movie Carol of the Bells, that employed 70% cast and crew with disabilities! We look forward to seeing what you do next in your career and in support of the community.

Making Space

So, the moral of the story is to not only show up, but to show up and then get out of the way. Make space and allocate time for youth and young adults with disabilities — ensure youth with disabilities have a role, space for leading, support of their experience, follow-up on the experience and champions of their work throughout. Making space so others may lead, this is our calling. For those who want to lead must follow.

Picture 4 Kevin, Derek, Sean, RJ and Chris together after the Youth Strand Networking Session.
Picture 4 Kevin, Derek, Sean, RJ and Chris together after the Youth Strand Networking Session.

Postlude

Derek and Sean reunited in May 2019 at Lights! Camera! Access! Silicon Valley Career Exploration Summit. They remain in touch and are networking to discover how they can work together again.

“We can support each other, we can learn from each other.” — Ed Roberts

Picture 5 Derek & Sean reunited in May 2019, pictured after the Lights! Camera! Access! LinkedIn Rock Your Profile workshop.
Picture 5 Derek & Sean reunited in May 2019, pictured after the Lights! Camera! Access! LinkedIn Rock Your Profile workshop.

Resources

California Transition Alliance

California Transition Institute

California Special Education Division, California Department of Education

California Department of Rehabilitation

California Employment Development Department

California Youth Leadership Forum

Lights! Camera! Access!

ForwardWorks Consulting

National Disability Mentoring Coalition

Partners for Youth with Disabilities

Project SEARCH

Inclusion Films

Disability Film Challenge

The Cast

Kevin Fortunato (@KJF797) is a student at TCHS Brandywine in the Early Childhood Education program. A keynote presenter at the 2016 California Transition Alliance conference, Kevin has also presented at NTACT (National Technical Assistance Center on Transition) and the 2016 Pennsylvania Transition conference. As a paid actor in the Bates Haunted Motel this experience led to the development of job and life skills showing the need to design and stretch learning beyond the school walls.

Chris Coulston (@irishchris2014) is a Project SEARCH TM graduate and now employee at Christiana Care Health Systems. He has keynoted at the 2016 and 2015 California Transition Alliance conference, and presented workshops at the 2016 and 2014 NTACT conference, 2011–2015 Delaware Transition conference, 2016 Pennsylvania Transition conference and the 2012 National Transition conference. He is a graduate of Jr. Partners in Policymaking.

Sein Keilberg-Tucker is graduate of Fairfield High School (California) and a recipient of the Solano County Office of Education Adult Transition Program Certificate of Completion. In November 2018, he was a featured speaker at the Bridge to the Future Institute, a conference of 2,000 attendees organized by the California Transition Alliance. He also joined the actor RJ Mitte and Derek Shields of the National Disability Mentoring Coalition to deliver a workshop for youth with disabilities on networking skills as part of a self-determination youth strand. Sean is a hard worker and team player and is working on his public relations skills to grow his career in media.

RJ Mitte (@RjMitte). At the young age of three, Louisiana native Mitte was diagnosed with Cerebral Palsy, much like his character ”Walt Jr.” on AMC’s hit show Breaking Bad. Having CP has never deterred his drive to succeed in television, film and advertising, as a chance encounter with a casting director landed RJ in various roles on SHOWTIME’s Weeds, NBC’s Vegas, and CW’s Everybody Hates Chris, until being cast in his life-changing role on Breaking Bad.

Throughout the years, RJ has been a motivating role model to his peers around the world by championing his disability with the goal of removing the stigma associated with disability. By bringing awareness to those who sustain life-threatening illness, RJ has engaged in public speaking on his own issues with bullying and prejudice and serves as the official Ambassador for the United Cerebral Palsy Association and Shriner’s Children’s Hospitals. He has also blogged for the U.S. Department of Labor’s Office of Disability Employment Policy (ODEP) and was a spokesperson for the National Disability Institute’s Real Economic Impact Tour encouraging increased financial literacy and economic empowerment among youth and young adults with disabilities.

Sue Sawyer is President of the California Transition Alliance. In addition to her role with the Alliance, Sue is currently a member of the California Community of Practice Leadership Team, representing the CA Transition Alliance and serves as a member of the Consortium on Employment for California Youth (CECY). Sue is passionate about the value of career planning and self-advocacy for every young person. Currently retired, Sue has directed an Improving Transition Outcomes project, funded through the Office of Disability Employment Policy. She also has a history of participating in the WorkAbility I program as a project Director, Chair of the Governmental Relations Committee, Regional Chair and State Advisory Board member.

Elizabeth Zastrow is the California Transition Alliance Training Chair and a Program Specialist in the Lodi Unified School District. Liz’s career includes working as special education teacher of the Deaf and Blind and she served in the United States Peace Corps employed with the Jamaica Association for the Deaf and the Salvation Army for the Blind. Upon returning to the United States she joined Lodi Unified School District where she has worked as a teacher, and program specialist that focuses on autism and low incidence disabilities. She is playing a leadership role in transition through the WorkAbility program, CA Promise Grant and a member of the CA CoP leadership team.

Tari Hartman Squire (@EINSOFComm) is Founding CEO of EIN SOF Communications, Inc., a leading-edge woman-owned business focused on disability-inclusive diversity and public policy, specializing in strategic marketing, branding and employment. EIN SOF launched disability strategic marketing as a genre with her award-winning My Left Foot campaign, proving the Americans with Disabilities Act (ADA) was a marketing opportunity. EIN SOF produces Lights! Camera! Access! Career Exploration Summits with Loreen Arbus, National Disability Mentoring Coalition, PolicyWorks, Deaf Film Camp, Inclusion Films and others to improve disability portrayals and increase employment in media.

Derek Shields (@derekshieldsFWD) is President of ForwardWorks Consulting, LLC and Director of the National Disability Mentoring Coalition. Connect with Derek on LinkedIn.

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Inclusion through Mentoring

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The National Disability Mentoring Coalition publishes content to increase the awareness, quality and impact of mentoring for youth and adults with disabilities.

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Inclusion through Mentoring

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