We are accustomed to seeing in particular ways. An “I’m fine” follows a “How are you?” and if someone responds instead with “the sky sure is green today” we’re forced to pause, to consider this slightly unusual event. When we see a disabled person, someone whose behavior or appearance is remarkably different, who doesn’t fit into our established mental categories of “ordinary person,” many feel disoriented and afraid.

 

Leadership in the disability community stems first from transforming whenever possible the limitations of disabilities into strengths. If you can see what makes you different as an advantage rather than as hardship, you will feel more confident, and this confidence can inspire others. I would define leadership as it relates to the disability community as just this imaginative awareness: taking what others see and rewriting it so they can attempt to see it your way, too. It’s not unlike what Keats called “negative capability”: holding two contradictory ideas in your mind (advantaged/disadvantaged, blessed/cursed) and coming to inspiration through the tension of these opposites.

 

Neil Marcus, a playwright who suffers from dystonia, used just this creative tension in the performance of his play “Storm Reading.” Where others see his behavior as a limitation (his nervous system forces his body to make many movements which appear strange and awkward), he insists on finding the opportunity hidden within this nervous affliction. Where others call him “twisted, paralyzed, tortured” he points out that dystonia allows him to “leap and soar and twist and turn constantly in public, thus challenging stereotypes of every sort and making him very interesting to watch and sit next to during lunch hour.” The play concludes with the statement: “See a disabled person clearly and chances are you'll see yourself clearly. That is when there are no limits. And there are no limits as to when that will happen.” Mr. Marcus is a leader not only for having the bravery to pursue his art, get it on stage and show it to people, and not only because he raises awareness, encouraging people to see the human being behind the disability, but because he reaches out to all of us, reminding us that we are all different and fallen and a little weird at times.

 

Being an artist with schizophrenia, I especially identify with those who have overcome the limitations of this mental illness to pursue their art. Tom Harrell, a famous trumpet player who was diagnosed with schizophrenia, has many qualities as a leader I want to emulate in my own life. While he has had his ups and downs, and the disease has marked him noticeably (he often has a lack of affect when not playing the trumpet), he has played trumpet beautifully for decades despite this, and inspires his fellow musicians with his jazz interpretations. He takes both his God-given ability and his disability in stride, and isn’t ashamed either to admit to his shortcomings or to show off his talents.

 

Giving voice to your desires and making yourself heard is an integral part of leadership in the disability community, evidenced by the growing influence of the self-advocacy movement. Joe Meadours, while his work isn’t as flashy as a stage actor or a jazz musician, does the hard work of leadership: talking to his fellow disabled and seeing how he can help. Working throughout the country under the aegis of state government and private fellowships, Mr. Meadours calmly makes his voice heard, again and again, and listens to others to find out what they need to improve their quality of life. It’s not glamorous, but it’s what leaders have done throughout human history, I would say from the time of Cro-Magnons and before. They get up every morning and make sure everyone in the group has enough to eat, something to do, and a little bit of love and attention.

 

Getting ones voice heard through self-advocacy often necessitates political involvement, as was the case in India in the summer of 2010. Javed Abidi, a strong leader of the Disabled Rights Group, inspired twelve of his fellow leaders in the disabled community of southern India to go on indefinite hunger strike, as the Indian government had refused to give them a voice in their supposedly democratic society. Insisting both that the laws of India must reflect the intentions of the UN Convention on the Rights of Persons with Disabilities, and that disabled Indians must have a voice in the drafting of these new laws, Mr. Abidi demonstrates that self-advocacy means you have to get your hands dirty and get in people’s faces. While many governments including India’s are often more comfortable playing Dad, with paternalistic governance for the “good of all,” too often it’s the voiceless in society, like the disabled, who remain forgotten in such a system. Like Frederick Douglass said on his deathbed when asked for advice on how to seek social change by a young African-American, the answer is: “agitate, agitate, agitate.”

 

Whether it’s continuing to make beautiful art in the face of a disability, going into people’s homes who are disabled to find ways to help, or going on hunger strike to get precious media attention for social change, leadership for the disability community demands honesty, humility, and a commitment to others. Like other civil rights movements that preceded it, the movement for Disabled Rights is composed of many actors, large and small. I hope I am brave enough to follow their lead, both in my personal life and in my community, by remaining true to my art and myself, and by remembering to give back at every opportunity by helping others, whatever their situation may be.