It’s Time to Come Out of the Closet

Anupa Iyer is being honored as a Champion of Change for embodying the next generation of leadership within the disability community and her commitment to the promise of the Americans with Disabilities Act.

Anorexic/Bulimic…Suicidal…Bi-polar…Institutionalized. These words don’t typically describe a Champion of Change, but they describe me.   And these words describe countless others in our society who have a psychiatric disability but are too afraid to come out of the shadows and be themselves. 

Because of social stigma, too many people who suffer from mental illness feel alone, powerless, and hopeless.

As I got better, I found reintegrating into society by working and living independently was not easy. I was unable to honestly explain the gaps on my resume to potential employers because I was afraid I wouldn’t get the job. When I did disclose to get an accommodation, my colleagues found out and started teasing me.

My experiences led me to discover, albeit the hard way, that the voices of individuals with mental illness have been quelled because of the stigma that society has placed on the disease. It motivated me to pursue a law degree.

I realized that in order to end the stigma around mental illness, people need to start sharing their lived experiences with psychiatric disabilities. We need to become strong self-advocates. I started talking about my mental illness in public forums to educate society members and policy makers about the issues people with psychiatric disabilities face. Recently, I started Self Advocates Now Empowered- to encourage others with psychiatric disabilities to be open about their disability and get engaged in legislative advocacy. While Self Advocates Now Empowered is still in its initial stages of development, I hope that by being a Champion for Change other people, particularly young adults with psychiatric disabilities will want to get involved, and thereby change the governing conversation around mental illness.

Stigma exists because people with psychiatric disabilities don’t challenge the misconceptions around mental illness. I hope to change that.

Anupa Iyer is the Founder of Self Advocates Now Empowered (SANE).

Challenges + Competitions = Champions

Anjali Forber Pratt is being honored as a Champion of Change for embodying the next generation of leadership within the disability community and her commitment to the promise of the Americans with Disabilities Act.

Champions are victors in challenges or competitions and, as a Paralympic athlete, I have had the opportunity to be a champion in numerous races. Though, I truthfully never thought of myself as a champion of change because I simply do what I love: Make a difference in the lives of others and improve the landscape of disability nationwide and worldwide.

Being different, heads always turned when out in public. This wheelchair is what I know; I was sick as an infant with transverse myelitis that left me paralyzed. Before I first saw wheelchair racers competing at the Boston Marathon, I believed that I was going to simply outgrow my disability – that it was a phase. I thought to become an adult, I had to first get rid of my disability. Whether it was my skin color or my physical disability, it is not uncommon for me to stroll through an airport and have eyes starring or hear children whispering, "Mommy, what's that?" as they point to my wheelchair. For me, it has been about embracing these moments as teachable moments and using them as a foundation for my platform of change. I began doing this and integrating these opportunities to teach into my everyday life at a young age whether it was on a small scale of taking time to answer a child's innocent questions at a grocery store, or speaking to community groups about my disability. This eventually grew to a much larger scale of taking on my school district in federal court regarding equal access to education, and representing my country on the world stage at the Paralympic Games.

My underlying passion for my quest to make a difference stems from my motto: Dream. Drive. Do. I have been blessed with amazing opportunities in my life, and each of these opportunities has expanded my platform to initiate change that much bigger.

In the U.S., I am actively involved in my communities to show what people with disabilities are capable of. I help teach sport clinics and speak to corporations and non-for-profits about living life with a disability. I am actively involved with both US Paralympics, a division of the United States Olympic Committee as well as with Disabled Sports USA helping to provide sport opportunities for persons with disabilities and their families. Sports provided me with confidence and independence and was a constructive outlet for the daily frustrations I faced in our society. These experiences are rewarding because I can be a role model for others and for a young kid to realize they can be somebody when they grow up. The afternoon following  the Champions of Change event, I boarded a plane to spend a couple days at a family camp for kids with transverse myelitis. Interacting with these families, I was reminded of what it was like for me to be a kid and how powerful it was for me to see wheelchair racers who went to college. I learned at a young age that life was worth living, disability and all. I saw huge changes in these kids’ demeanors and watched their self-confidence grow as they challenged me to a race or told me about their favorite subject in school. To be on the flipside as an engaged citizen and a role model does make me feel like a Champion of Change. 

In addition to my athlete hat, I am also a scholar and these same issues shape my research agenda. My research interests center around individuals who are not given a chance, or who are left on the sidelines. My research interests focus on individuals who struggle to succeed due, in part, to some difference that has labeled them outside the mainstream. My work cuts across education (elementary, secondary and post-secondary), sports, work, and quality of life contexts. I am passionate about helping others to transform perceptions of what it means to be different, helping others accept their own differences, and motivating others to take action in their own lives and communities. As a member of more than one minority group, I have had personal experiences of being left on the sidelines, and I have faced resistance trying to emerge as a leader. It is my belief that oftentimes it is precisely these sidelined individuals who are able to help inspire others based on their own experiences. Therefore, I see my research as being instrumental not only to aid in the development of future leaders, but also to the academic field to provide empirical support for this.

Beyond the borders of the United States, I proudly wear a Team USA jersey as I compete or teach sports clinics.  Wearing this jersey comes with a responsibility to pay it forward. I have realized the power of this, and love motivating others to live up to their fullest potential. I have learned from my work in Ghana, Bermuda and India in particular that sport can be a catalyst for social change. Providing individuals with an opportunity to succeed athletically gains the attention of policy makers, educators, and community members. In these cases, I have seen perceptions of disability change to become more open and accepting. Individuals with disabilities cannot be denied this opportunity, which is why it is a part of my cause.  As such, I have co-written an educational coloring book Color. Learn & Play: All About Sports for Athletes with Physical Disabilities that is available online. Sport unifies us all. Sport provides an opportunity for individuals to come together regardless of race, political background, ability status, and/or gender. Sport is unique in that it transcends these boundaries and barriers imposed by society and allows for the focus to be on the activity itself, the sportsmanship, the finish line, or the end of the match. Deeper than that is the honor of representing one’s country that sport can also provide. For people with disabilities in many places I have visited abroad, who have previously been excluded from many affordances of society such as an education or pursuing a career, sport is one way where this can change. It has been my experiences with challenges, and competitions that have shaped me into a champion. I am truly honored to be a Champion of Change.

Anjali Forber Pratt is a Paralympic Medalist.

The Power of Community: Embracing “It Takes a Village to Raise a Child” in Policy Development and Service Design

Zach Garafalo is being honored as a Champion of Change for embodying the next generation of leadership within the disability community and his commitment to the promise of the Americans with Disabilities Act.

My personal story could have had a very different outcome. I was adopted at four months. From the outset, I displayed all the behaviors consistent with Attention Deficit Hyperactivity Disorder (ADHD). Think a bicycle missing its brakes. My bicycle also did not have any wheels, any steering or any chain. I was literally bumping around out of control in every direction. In Kenneth Grahame’s The Wind in the Willows, I was Mr. Toad. When I was two and a half years old, I was formally diagnosed with ADHD.

 My parents’ connection to the broader adoption community of support enabled them to learn about and access an array of services to assist in my pro-social development. Over many years, my parents wove together various interventions, summer camp, social skills groups, counseling, sports that helped me develop the insight and ability to compensate for and manage my excess energy. The unifying theme for my parents, and eventually me, was connecting with others to learn what resources existed.

I have always had positive adult role models. Role models do not need to be educated parents or helping professionals.  Connectedness and inspiration can come from unconventional places and be equally transformative. Teachers, community leaders, custodians, coaches and others devoted time to help nurture my passion for civic involvement and volunteerism. Caring adults took the time to mentor and help shape my leadership capacities. I served as Student Representative to the Natick School Committee, Chairperson of the Youth Advisory Board and youngest elected Town Meeting Member in Natick’s history. My deficits never defined me. I write this not to boast, but to inspire hope and to personally illustrate that people with disabilities do not have to be defined by their challenges.

I attended Southern Vermont College in Bennington, the kickoff site for the President’s 2020 College Completion Initiative. My college experience helped prepare me for a smooth transition into a great career and graduate studies. The Success Center allowed me to understand my strengths and areas for growth as a learner and equipped me with skills to compensate. What is remarkable about SVC is the community ethos that charges its students to think critically and challenge the status quo. Today I am challenging the status quo.

My personal story informs my work. This is why I get up every day and fight for the rights of all young people. My own lived experience – supported by research – has clearly documented that young people and families who are connected to their communities have better long term outcomes. We need to invest in children and families and work toward building a unified system where young people and those who care for them have knowledge of and access to services that form a cohesive whole as opposed to a fragmented hole. Empowering those who care for young people to navigate complex and multiple overlapping systems is vital.

Zach Garafalo is the Assistant Director of YOUTH POWER!