Inclusion starts at home and, ideally, extends into one’s community. As a person with disabilities raised by parents who taught me I was capable of anything I could imagine, I sought freedom.
I ran wild with my able-bodied siblings in our childhood garden, ran track and cross country with my high school peers, and pulled all-nighters in undergraduate college.
When my physical disability seemed like a social barrier, I took up the study of dance. After diagnosis with a mental illness, I began writing a book and went to graduate college.
Capital Region Disability Leaders and Visionaries
Meet these four Capital Region disability leaders and influencers who have inspired me through their activism and resilient approaches to life.
Discovering Community with Disability Leader Shameka Andrews
Shameka Andrews, 43, is the first of my Capital Region disability leaders and influencers. She recently started the Pride Center of Albany’s Prideability support group for LGBTQ individuals with disabilities, meeting bi-weekly on Zoom. I met her there. Born and raised in Albany NY, she coordinates community outreach at the Self Advocacy Association of New York State. Additionally, Shameka coordinates the Ms Wheelchair NY program, an advocacy and empowerment program for women who use wheelchairs. She serves on the Developmental Disabilities Planning Council and the NYS OPWDD Developmental Disabilities Advisory Council, among other boards and committees.
Writing It Down
Shameka writes about her life as a person with disability, and disability issues. Her books include Butterfly on Wheels and Wisdom on Wheels Interviews. She started writing as a way to deal with issues she encountered in her life. “I see my role as making sure disability and accessibility are always part of the conversation no matter what the conversation is about,” Shameka writes. “And to make sure that people with disabilities are actually at the table having their voices heard.” Asked what community means to her, she responded, “To me, community means people that support one another, lift each other up, come together for a common cause, help each other grow to better themselves and those around them.”
Giving the Voiceless a Voice with Amanda Blodgett
Poet and mental health advocate Amanda Blodgett works as Secretary for the Saratoga County Citizens’ Committee for Mental Health (SCCCMH). I serve on SCCCMH’s Newsletter Committee. We first met on a bus from Saratoga to Albany for Mental Health Association in New York State’s 2019 Mental Health Matters Legislative Advocacy Day. With a group brought together by SCCCMH, we attended talks by mental health activists. We also met with NY state legislators, and rallied at the state Capitol. When I saw Amanda speaking about mental health rights into a megaphone offered by a reporter, her confidence and honesty impressed me. The pandemic prevented the 2020 Mental Health Matters Day from occurring. But our friendship has endured. Raised in Chicago, she moved to Saratoga County at 22.
Ending Mental Health Stigma
Now 40, Amanda lives in Ballston Spa. As one of the Capital Region disability leaders, I asked how she began mental health/disability advocacy work. Amanda says: “First, I started just telling anyone who listened about my disability.” Her therapist told her about SCCCMH, which she joined in 2008. “SCCMH educates, supports, and informs to end stigma,” Amanda said. Through SCCCMH, she networked with other mental health advocacy groups. “I want to be a voice for the voiceless,” says Amanda. She aims to inform people in the Capital Region and beyond about mental illness. “That could be educating them as to what mental illness is and what it’s not,” Amanda writes.
Working for Saratoga’s Citizens
Amanda considers mentally ill people’s rights important, too. When the Saratoga County Mental Health Center moved from Saratoga Hospital’s grounds to 135 South Broadway, some people in Saratoga protested, claiming the center’s clients would deface the city’s gateway.
So Amanda wrote a letter to Saratoga County’s City Hall. She joined with SCCCMH to fight to allow the move to occur. “There is so much stigma,” she says. “It’s hard to get people to speak for our rights.” Amanda remembers a volunteer position where the organization discriminated against her after she revealed her “invisible disability.” But, “most people are supportive,” she says. She believes communities have the power to come together to celebrate differences. As a writer, Amanda appreciates the opportunity to reach a larger audience. She chooses the poetry genre: “a great way to reach people.”
Becoming Mindful with Martel Catalano
Martel Catalano (age 31) and her friend Nell Pritchard founded their nonprofit Beyond My Battle in 2018. Their goal: to support people with serious illnesses, rare diseases, and disabilities. Rooted in mindfulness and psychology, BMB offers support groups and workshops. Also, they offer events such as a pop-up art show called Art with Heart and Hope.
Martel grew up in a small Manhattan suburb in northern New Jersey. She has lived in Saratoga since 2016. BMB originated in 2017 as an online support group, “providing a space where people with all kinds of illnesses and disabilities could find camaraderie and support.”
“Ultimately we want to be more resilient in the face of health-related uncertainty,” Martel writes. I asked how her work through BMB shapes her community perspective. Martel recalled that as a teenager, “when I was in a really bad place with my own rare disease, my mom kept telling me the best way to make myself feel better would be to help others.”
Martel’s Meditation Journey
In her mid-twenties, Martel began studying meditation. She got involved in service through some of her teachers. “My perspectives on community clicked in a new way,” she said. And as a result, BMB grew quickly. Through BMB, Martel met many people, who “provide [her] an immense sense of belonging.”
Martel’s studies have helped her “blend the principles of mindfulness, and the inner exploration and psychology, to create the approach we take at BMB. All of our programs help patients and caregivers cultivate a sense of awareness that leads to greater understanding and presence.”
Walking in Peace with Jeffrey Halpern
Jeffrey Halpern (age 63) is a Galway, NY-based peace activist and drummer. Jeffrey has Parkinson’s disease, and embodies the possibility that one can achieve a life honoring the well being of others. He always offered genuine, kind words when I saw him during difficult times in my life.
Originally from Queens, NY, Jeffrey began his career as an activist in 1970. At 13, he attended a Vietnam War protest in Washington, DC with his father. Since then, Jeffrey has participated in many peace and social justice issues, including No Nukes, immigrant rights, and climate change. He also supports Native American and African American rights.
Jeffrey has participated in civil disobedience (CD) protests, and has been arrested five times. He writes: “Every time I have been arrested, I have felt that it was important. Non-violent CD is the way I can express my feelings and speak truth to power.”
As a member of the Saratoga Peace Alliance, Jeffrey has participated in peace vigils held in front of the post office in Saratoga Springs. They’ve met once a week for 12 years. “My activism has had a big influence on my world view,” he writes. “It shows me that it is important to follow my conscience and act according to my principles.” Jeffrey’s vision and commitment place him among the Capital Region’s amazing disability leaders.
Written by: Effy Redman
Effy Redman is a memoirist, educator, and disability advocate living in Ballston Spa, NY. She has published work in the New York Times, Vice, Ravishly, and Chronogram, among other places. She holds an MFA in Creative Writing from CUNY Hunter College.