Inclusion – CapNY

Author Noelle Gentile: Advocate, Educate, and Love

Updated: July 2025

Author, director, writer, acting coach, and educator Noelle Gentile draws on all her strengths as an advocate and educator supporting her daughters Lucia and Isla, who is autistic and has epilepsy.

A Family’s Journey

Noelle Gentile has two remarkable daughters–Isla and Lucia a.k.a. “Lulu”. Born and raised in Albany, NY, Noelle spent 13 years in Brooklyn before returning home to Albany with her family after Isla’s birth.

Isla’s Diagnosis

Noelle’s daughter Isla was diagnosed with epilepsy in February 2016 and on the autism spectrum in June 2018. (An estimated 30% of people diagnosed with autism have epilepsy, too.) Isla also has global delays. She struggles with side effects from the epilepsy medications. Yet, Isla “deeply connects with other people,” Noelle said. “She has incredible instincts about who other people are.”

It was a long journey. There were several diagnoses, starting with when Isla was 16 months old. An MRI showed non-specific brain damage. Noelle was devastated. “I didn’t understand it,” she said. “I didn’t know what it meant. Both the epilepsy and the autism diagnoses we had to fight for. We were relieved because we had a better picture of what was happening and how to support her.”

Noelle reiterated that a lot of the heartache of having a child with diverse abilities stems from the world falling short of embracing the child with adequate compassion and understanding.

Noelle’s husband has a lot of trauma surrounding Isla’s seizures, and related anxiety. Noelle remarked that it is different for her. She has done a great deal of processing Isla’s journey through her writing and art. Noelle said of herself and her husband, “We understand where each other are, but we’re not fully in the same place.”

Finding Schools and Resources

Noelle described how her family has navigated school, medical, and other systems for Isla’s well being. Noelle said, “I have had to sharpen my tools.” Naturally a people pleaser, she is now less so. “Isla has challenged me to let that part of me go,” Noelle said.

change in the world. “There’s a collective of us that wants to see this change,” Noelle said. Indeed, her dear friend Alyssa said, “Isla doesn’t need to change for the world; the world needs to change for Isla.” Through Make-a-Wish Northeast New York (with help from Make-a-Wish Southern Florida), Isla had her wish to swim with dolphins in Florida beautifully granted. (Make-a-Wish grants the wishes of children with critical illnesses.)

The Story of Two Sisters

In her role as author, Noelle Gentile wrote the children’s book Isla and Lulu from the perspective of Lulu–Isla’s then-four year old sister. Love between sisters personalizes this book’s themes of inclusivity and open dialogue amongst people seeking to embrace those with diverse abilities. Noelle decided to write the book after finding out that Isla was at risk for SUDEP (sudden unexpected death in epilepsy). Noelle observed that some people were distancing themselves from her family. The book means “to bring people towards us instead of further away.”

Asked about challenges she has overcome as a parent, Noelle remembered a family vacation on Cape Cod. Her two daughters were playing on the beach when two little girls approached Isla. Noelle felt anxious. Often children who approached often left when they realized Isla was different. But the two little girls stayed on and played with Isla. It turned out that they had a classmate with diverse abilities. Perhaps the world is, little by little, changing for the better.

Living Out Loud

As an advocate, Noelle tries not to center on herself as “Isla’s Mom” in the experience. The book Isla and Lulu and the people it can touch play a large part in her advocacy. She is also “gearing up to do speaking” about Isla’s medical experiences.

I asked Noelle what inspires her advocacy work. She spoke of a miscarriage eight years ago, and how she was not encouraged to speak about the experience. “Where’s our story?” she found herself asking. Noelle emphasized how important it is to see yourself reflected in literature, film, TV. It’s important for the world to respect Isla’s journey. “I want my family to be able to live out loud,” Noelle said.

Capital Region Disability Leaders And Visionaries

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.

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.

Civil Disobedience

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.

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. Follow Effy on Twitter: @effyredman.

Disabilities Inclusion Resources

Voices from Albany’s Queer Movement: Caring and Inclusive

If you’re a queer person thinking of moving to Albany, listening to voices from Albany’s queer movement provides perspective. There’s only so much you can learn from internet research.

In order to get some insights, I spoke with four Albany queer community advocates. Each of them – whether connecting with queer youth, making inclusive health policy reform, or through direct services, like emergency housing – have been doing great queer ground work. Here are some of their answers to my questions about where Albany’s queer movement stands and opportunities for growth.

In this article, we’ll hear from Christina Romeo of GLSEN for Upstate New York, Courtney D’Allaird of UAlbany’s Gender and Sexuality Resource Center (GSRC), Jonathan Meagher-Zaya formerly of the Community Foundation for the Greater Capital Region, and Tandra R. LaGrone of In Our Own Voices, Inc.

What is your perspective on queer community in Albany?

Christina Romeo: “The queer community in Albany is spread out. People are in their own silos. For someone new coming here, it’s worth putting in the effort to find the Facebook groups (try Courtney D’Alliard’s Queer Exchange FB Group). Find open mic nights and meetups and sports groups. Do your research.

People in Albany care. They want things to be better. I found community with other advocates who just happen to be queer themselves or are extremely queer-inclusive.”

The Queer Community is Incredibly Diverse

Jonathan Meagher-Zayas: “The queer community is incredibly diverse and wants a lot of different things, so it ends up being disconnected. Something positive that’s happened because of that is people fighting to make existing spaces more inclusive, instead of creating queer enclaves. For example, St. Ann Institute now has a shelter dedicated to LGBTQ Homeless Youth.

A Job That Pays Me to do LGBTQ+ Work is Radical

Courtney D’Allaird: “People got comfortable. The LGBTQ+ community in Albany does not have to have a collective consciousness. Because this is a blue state and we are afforded legal protections and have a lot of access and resources, we get comfortable. We can just go live our lives in the suburbs. And in some ways it is radical to just live. Owning my home now is huge as someone who was kicked out for being queer and was homeless as a child. Having a job that pays me to do LGBTQ+ work and live my life comfortably is radical.

Tandra LaGrone: “Assimilation sometimes has a different context [than merely trying to fit in]. Sometimes it’s about a human right. We have a right to live safely. We have a right to be part of and live freely in society. I look at Black and Latinx Pride as community intervention. It’s about staking our place in society.

Soon enough, society will evolve beyond just the surface standards of what’s acceptable and move beyond what we’ve been socialized to believe.”

“We can’t change the color of our skin. Why are Black men still disproportionately suffering from HIV/AIDS? Why are Black lesbian or Black trans women dying or the last to get health services? When I asked people in 2012 if marriage equality was a priority for them, it wasn’t. Feeling isolated. Feeling stigmatized. Not being treated fairly. That’s what they were concerned about.

Who has power [in Albany]? It’s white men. We need accountability for institutions of good ‘ole boys that keep getting perpetuated, including gay white men. If they’re unwilling to give up privilege, we won’t get substantive change.”

How do you envision the future of Albany’s queer movement and the community in CapNY?

Romeo: “I have a lot of hope. There can be a shift in culture. Younger folks, not just students, but Millennials who are professionals, need to lead the changes making non-profits more sustainable, rather than just accumulating power. There needs to be more intentional outreach within our community to uplift the voices of those who are the most marginalized and vulnerable, our trans community, gender non-conforming, and people of color. Let’s legitimize and create spaces for younger generations to be radical. It’s not enough to assimilate. We aren’t just asking for tolerance anymore. We want to recognize that queer voices matter. Our lives matter. We need to let all constituents have a voice. Embrace our differences. Be willing to be vulnerable and authentic.”

A Central Vision for the LGBTQ+ Community

D’Allaird: “I would love to see the queer community come together and be more visible in Albany. There hasn’t really been a leader with a central vision who would speak to us in the LGBTQ+ community and not just those who fit the box, like marriage or families. What about queer people who can’t assimilate, like trans identifying people or people of color, or aren’t as interested in relationships or surrogacy? There needs to be greater access to the most marginalized groups. Nonprofits and other organizations, including UAlbany, will be part of that drive for substantive change.”

Younger and More Diverse Leadership

Meagher-Zayas: “We need to realize how all these different issues are intersectional. We need to look at it through an equity lens. There’s a NY Transgender Advocacy Group based in NYC, but here in Upstate New York, a lot of institutional-level momentum stopped at marriage equality.

Orgs need to evolve, become more sustainable, with younger and more diverse leadership. There are more people now talking about racial justice and equity. The state won’t change unless forced. Private industry won’t change unless it’s profitable. So I see nonprofits as leading that change, recognized as being open for transitions to better representation in leadership, investing in BIPOC leaders.”

LaGrone: “I see so much compassion and empathy, bright and talented individuals who are fearless. My only wish is for them to know their history and do their homework. I believe they will fight for true liberation because if the most marginalized among us achieve liberation, we all do.”

Are you looking to build an independent life for yourself in Albany, become an activist there, or just casually engage with local folx? These voices may help you get to know the kinds of people within Albany’s queer movement who would welcome you, if you reached out and called.

Mia Nilo is an overeducated, self-identified hustler hell bent on undermining the status quo through overly opinionated think pieces and reviews written from the perspective of a queer, woman of color Millennial. Attended Oxford about as long as Gatsby did and has settled for an Upstate New York life despite her Southern California heart. When not writing, hiking, or wine tasting, you can find her at book club or a local protest. Read more of her work on www.miagnilo.com/blog. You can also find her cooking or latest scrabble game on her Insta @mia_bitesoflife and see what’s currently making her laugh the hardest on her Twitter @bitesize_rant.

Community Inclusion Queer

Tag: Inclusion