Dan Habib, Project Director of Inclusive Communities at the Westchester Institute of Human Development (WIHD) and founder of LikeRightNow Films, is a multi-hyphenate filmmaker and educator who can now add Emmy winner to his resume. This past September, along with his co-director and son Samuel Habib, he took home the statue in the Documentary category of the News & Documentary Emmy Awards for My Disability Roadmap. The extraordinary short film follows Samuel, who was born with GNAO1, a rare neurodevelopmental disorder, and uses a wheelchair and communication device, as he meets successful adults with disabilities to help create a path for himself and others.
Habib was formerly Project Director and Filmmaker at the University of New Hampshire Institute on Disability (IOD), and served on President Obama’s President’s Committee for People with Intellectual Disabilities. His films, which have been screened worldwide, also include Including Samuel which chronicles the Habib family’s efforts to include Samuel in every facet of their lives, Intelligent Lives, which challenges the perceptions of intelligence through the eyes of three people with intellectual disabilities, and the upcoming feature-length documentary The Ride Ahead, His widely viewed Tedx talk, “Disabling Segregation,” on the benefits of inclusion in schools, can be found here. Our conversation has been edited for length and clarity.
Let’s start with Inclusive Communities. What is its mission?
We use the power of documentary film to create more inclusive communities. The focus is on education, employment, independent living — everything across the spectrum. The work is both regional and national in nature. We do a lot of webinars, and a big part of my work is making films, including for events and education material. I’m doing this for the most part remotely from New Hampshire, where we live.
You started out as a photojournalist. How soon after Samuel was born did you change your focus?
When Samuel was three years old [he turns 24 on Dec. 7] a few things happened. My wife, Betsy [McNamara], had taken a year-long leadership series for parents with kids with disabilities and self-advocates, much like like Partners in Policymaking NY. It was an incredible opportunity. She told me, “You have to do this, we have to be on the same page.” I did and I came out of it wanting Samuel to feel like he belonged in every aspect of our family and our community, and he couldn’t do this without knowing that belonged in our neighborhood school.
That year Samuel also got really sick and was in critical condition for several weeks. When he stabilized, his neurologist said, “Have you ever thought of telling the story of your family?” That’s when I started filming Including Samuel.
Watching that documentary I thought about my own experience and how I didn’t know how to surmount being told inclusion was not for my family member, that there would be no help, no aide available in a general ed classroom, and she would be better served in a special ed classroom.
The student is not the one with the problem, it’s the school that needs to change. Too many schools put the onus on family and not on changing the school’s approach to education. If anyone says to me, “We have this student who can’t be successful with inclusion,” I can tell them about a student in another district with a similar profile who has been extremely successful. It’s about following the law [the Individuals with Disabilities Education Act].
It doesn’t mean it’s easy, especially if a family has no other choice but to get into an expensive legal battle, which many cannot afford. But I’ve never met a family that regretted pushing for inclusion.
The documentary also shines a light on how beautifully the whole family, including Samuel’s older brother, Isaiah, interact, and how important this was to Samuel’s development. It’s great parenting.
It’s not just parenting, though. Without community support and the spirit of inclusion in our community in Concord [New Hampshire], Samuel would not have the life he has. Everyone was welcoming, from his preschool to the public school kindergarten to having downtown Concord accessible to wheelchairs to the local community college being fully accessible. It’s so many things.
And I learned from my parents, too. My mom was a social worker and my father was a college professor and they were always about impacting people in positive ways. As a teenager, it dawned on me that life is about increasing joy and decreasing pain however you do that. I found that filmmaking is the most effective vehicle for me to do this.
My Disability Roadmap follows a much older Samuel as he not only seeks guidance from successful adults with disabilities to help him chart his own path, but also pursues a goal to have people see those with disabilities as individuals who deserve respect and equal rights. So it was really something when he met then-Vice President Biden and Biden stroked Samuel’s face as if he were a child. Not surprisingly, that clip went viral. I have to ask: Did you ever hear from Biden?
To clarify, that clip went viral before it was included in the documentary. But no, we never heard from Biden’s camp!
Can you talk about your new film, The Ride Ahead?
Yes, it’s done! It just needs a few final touches.
It was co-directed by me and Samuel, and he did some camerawork with a GoPro. It’s a feature-length film about Samuel’s quest to become an adult and live the full life that he wants — independent living, relationships, sex. No one tells you how to be an adult much less one with a disability so it’s about his journey to navigate this.
We had actually planned for My Disability Roadmap to be a feature film, but about a year into production we shared a sizzle reel with The New York Times and they loved it, so they helped us develop it into a short, and [that NYT Op-Docs initiative] helped it go all over the world. We then did two more years of filming and editing, more in-depth interviews with incredible mentors, and added animation and a music score. Now we’re figuring out the film festival release plan for next year.
What is Samuel up to now?
In addition to his part-time job at WIHD, he’s working on his Associate Degree in a community college in Concord. He takes one class a semester. It’s very labor-intensive for him. Right now he’s taking statistics, has a 3.0 GPA and is mostly enjoying being on a college campus.
Talk about your dual roles as educator and filmmaker. Is there ever any tension there?
No, I wouldn’t say tension. I was a photojournalist for 20 years before I became a filmmaker full-time in 2008, and it’s always been about communication and education, and informing people about social issues and pressing topics. It’s not primarily about the craft and art of making film, it’s always about impact and social change.
I’ve always felt if I give people a look at what works and what can lead to success, in any area, and highlight those pathways, there’s a model for families to see.
What would you say has been a career high point, and a high point as Samuel’s father?
The moment we won the Emmy award was a high point on both those fronts. It was a film co-directed with Samuel and something close to our family’s heart that we created together. He was able to lead the production and was given a prestigious honor for a film that meant so much to us. It just blew our minds. And as a father, to see him get up on the stage and speak while using his communication device in front of six- or seven-hundred people, their eyes glued to him, it was incredible. [Watch Samuel’s speech here!]
But truly as a father, I’m proud of how much agency Samuel has in huge decisions in his life, like going to college or putting himself out there to get a girlfriend. I’m proud he has confidence and has worked hard to cultivate and advance that. He’s really not afraid to take risks and that’s something many of us can learn from him.
The New York City Department of Education has failed to appropriately identify, diagnose, educate and treat students with an Emotional Disability (ED) classification, according to a scathing report released this week.
A Crisis in Education found that the mental health and educational needs of the approximately 7,000 NYC public school students with a disability classification formerly known as Emotional Disturbance, and more recently as Emotional Disability, “have been all but ignored.” While eligible for special education protections under federal law, it notes that they’re consistently placed “in inappropriately restrictive settings and denied equal, meaningful access to educational opportunities and support.”
Additionally, it found these students are disproportionately students of color from economically disadvantaged backgrounds.
According to a press release shared by New York Lawyers for the Public Interests (NYLPI), the report “illustrates that the failures of the DOE, New York City, and NYSED have caused many students with ED to be illegally segregated in overly restrictive settings, deprived of a reasonable opportunity to make meaningful educational progress, inappropriately disciplined, and isolated from their general education peers.”
NYLPI, along with law firms Kasowitz Benson Torres and Stroock & Stroock & Lavan, authored the report, which also proposes a framework for the DOE to develop evidence-based systems and protocols.
The mental health and emotional wellness of students is a growing concern nationwide. This past spring, New York City published “Care, Community, Action: A Mental Health Plan for NYC,” a comprehensive mental health plan to alleviate and prevent emotional suffering, and, according to its website, “save lives,” but the new report states that “there has been no similar response from the DOE.”
The Individuals with Disability Education Act (IDEA) notes that an Emotional Disability means a condition exhibiting one or more of the following characteristics over a long period of time, and to a marked degree that adversely affects a child’s educational performance:
In other news, New York Gov. Kathy Hochul announced Nov. 30 that more than $5.1 million has been awarded to support 137 school-based mental health clinic satellites throughout New York State, including 82 at high-needs schools.
Administered by the New York State Office of Mental Health, the funding is part of the governor’s $1 billion plan to transform New York’s mental health care system, which includes a total of $8.3 million to support and expand these clinics throughout the state.
Photo: Pexels.com
Conventional wisdom dictates that it’s wrong to stare at people with a disability, but averting one’s eyes, whether out of kindness, unease, or a little bit of both, is also a way to render that person invisible.
Challenging the collective understanding of seeing and being seen is the inspiration behind the worldwide art piece On Display Global. Honoring the UN’s International Day of Persons with Disabilities on Dec. 3, the far-flung installation consists of a human “sculpture court” created by disabled performers and is based on stillness, giving the viewer the ability to see and the performer the ability to see back.
“On Display was created [in 2015] when a museum curator told me that whereas he saw real sculptures as beautiful he struggled with seeing real people portraying sculptures in the same way, especially those who had physical disabilities,” says Heidi Latsky, the brainchild of the project and founder and artistic director of Heidi Latsky Dance, a New York-based company that focuses on inclusivity and diversity.
“He was very ashamed of his response, but I was delighted he reached out to me to discuss this. I kept thinking about our exchange and formulated some creative responses. I wanted to create a safe space where the audience could really ‘look’ and the performers could ‘look’ back.”
When the New York City Mayor’s Office for People with Disabilities invited the company to create a work to celebrate the 25th anniversary of the Americans with Disabilities Act, Latsky says she “brought together a dynamic, diverse group of performers and we did On Display through the city. I loved the stillness in the bustling city as much as I loved the audience’s responses.”
And then on Dec. 3 of that same year, she adds, they performed the installation in the lobby of the United Nations while a colleague performed it in Hobart, Australia with her inclusive group.
Stavros Niarchos Foundation Library from noon to 1 p.m.
Those interested in performing must register by Dec. 2. Because The Boost is posting this so close to the deadline, regular training sessions are over. However, Heidi Latsky Dance has graciously suggested you contact Jamie at Jamie@heidilatskydance.org to discuss training videos and options.
For more information on the installation, click here.
A new New York law aims to boost detection of abuse of kids with I/DD, scores of disabled people are caught in the Israel-Hamas conflict, AI models may contain biases against people with disabilities, and more news for the week ending Dec. 2, 2023.
NYC leaders address after-school concerns of families with kids with disabilities The Committee on Youth Services spoke with the Department of Ed and other city agencies about addressing “gaps” in services. (News12 Westchester)
Law passed to boost detection of abuse of kids with I/DD The Office of Children and Family Services has been charged with developing and updating a training program on the challenges faced by children with I/DD. (CNY Central)
Dept. of Labor announces states joining initiative to increase competitive integrated employment New York is among the 12 “core states” chosen to participate in the National Expansion of Employment Opportunities Network initiative. (Dept. of Labor)
Florida leaves $800 million on the table for disability services Advocates say officials have let money fall through the cracks, money that would give 23,000 people on a waiting list the critical services they need. (Orlando Sentinel)
UCLA has a new disability studies major — the first of its kind at any public university in California California universities have struggled to institutionalize disability scholarship and to hire disabled faculty to teach it. (Los Angeles Times)
Colorado autism care providers worry proposed Medicaid adjustments aren’t enough to stabilize industry (Colorado Public Radio)
Disability News from Gaza and Israel A curation of recent articles about people with disabilities caught in the Israel-Hamas conflict. (Disability Brief)
Biden Administration Works to Increase Preschool Inclusion Officials outline steps to alleviate “significant barriers” to accessing inclusive childcare programs. (Disability Scoop)
A rift over ‘profound autism’ reveals a community’s deeper divide Amid a burgeoning neurodiversity movement, some say autistic children who are nonverbal and intellectually disabled are being left behind. (Washington Post)
When We Design for Autism, We Design for Everyone This article from October is a fascinating look at neuro-inclusive design. (Metropolis)
We’re facing a crisis in caregiving for the disability community New York organizations made clear to legislators and Gov. Hochul that a significant increase in pay for direct-support professionals was needed — and they were ignored. (Times Union)
The next Census could undercount the number of disabled Americans by 20 million This piece argues that the disability questions the Cenus is proposing to use undercounted this population in two other surveys. (Statnews.com)
Trained AI models exhibit learned disability bias The tools are driven by learned associations that often contain biases against persons with disabilities. (Penn State)
At Malls Nationwide, Santa Goes Sensory-Friendly More than 300 malls are set to participate in the events known as “Caring Santa.” (Disability Scoop)
This lovely market from Community Connections Life (CCLife.art), a hospitality platform that helps promote the lives of adults with I/DD based in Pelham, N.Y., features items made and sold by people with disabilities.
You can also expect an inexpensive menu of food that includes Christmas cupcakes, holiday lattes and cake pops.
Details
When: Dec. 8 and Dec. 9, 2023
Time: Friday 11 a.m. to 2 p.m., Saturday 11 a.m. to 3 p.m.
Where: 135 Radio Circle Dr., Mt. Kisco, N.Y.
This very cool one-of-a-kind pop-up shop is presented by Shames JCC on the Hudson.
All products being sold are from neurodivergent artisans. Get a peek ahead of time via Instagram where you’ll find two of the vendors: Upcycled handmade goods inspired by nature from Flowers + Fibers, @flowersplusfibers, and artwork by Will Richman, @will.richman.
Details
When: Dec. 10, 2023
Time: 10 a.m. to 1 p.m.
Where: 371 S Broadway, Tarrytown, NY 10591
Image: The screenshot is from the flyer designed by Mo Kikoler
This free virtual discussion, part of the “Engagement Series” from Person Centered Services, is geared toward people receiving Care Coordination, family and caregivers, and anyone else who might benefit from the information.
Recognizing & Preventing Domestic & Sexual Violence will feature Kelly Weiss, project coordinator from the Office for the Prevention of Domestic Violence. The discussion will include:
Details
When: Dec. 14, 2023
Time: 6 p.m.
The grassroots Coalition for Self-Direction Families of New York State (C4SD), led by families of New Yorkers with Intellectual and Developmental Disabilities (I/DD), wants to expand its agenda and, to do so, wants to know yours.
The goal of C4SD, which just launched in October 2023, is to “protect and improve the system of individual Self-Directed budgets in New York State, as one of the primary pathways to achieving integrated lives, based on freedom of choice.” It has been focusing on the “red flag” policies that make it increasingly difficult to get approval for activities that fall under the “Community Classes & Publicly Available Training/Coaching” category. (Read more about that here.)
Now, it wants to know the services you’re interested in, your vision for the Self-Direction system, and what the organization’s top priorities should be next. It’ll take you mere minutes to answer the questions designed to help you and your loved one. Click here for the C4SD Self-Direction Survey now!
The Supreme Court’s 1999 Olmstead decision gave people with I/DD the constitutional right to live and receive services in the most integrated setting appropriate. C4SD works to: protect this right; make Self-Direction easily available to anyone who chooses it; and end all policies that prevent the free exercise of choice.
The special ed teacher crisis, a controversial federal proposal affecting pay for Direct Support Professionals, a Hallmark Christmas movie shines a light on autism and more news for the week ending Nov. 18, 2023.
The number of students in special education has doubled over the past four decades so, which helps explain the growing shortage of special ed teachers nationwide. This week, The 74, a nonprofit news organization, has several reports that show the scope of the challenges and workarounds:
Disability groups rally for higher wages, citing thousands of vacant positions Read about the Capitol rally that called on Gov. Kathy Hochul to invest in the Direct Support Professional workforce. (Times Union)
Inside the Pleasantville Cottage School controversy Another (very measured) look at Pleasantville Cottage School, a residential center for vulnerable and troubled children and teens that also serves individuals with I/DD. (lohud)
Maine Rarely Sanctions Residential Care Facilities Even After Severe Abuse or Neglect Incidents From 2020 to 2022, residential care facilities were cited for rights violations and hundreds of other deficiencies. (propublica.org)
Knoxville Police Department launches program to improve safety for those with developmental or cognitive disabilities Another city helps smooth communication between first responders and the disability community. (wbir.com)
Disability Providers Warn Federal Overtime Pay Rule Could Jeopardize Services A new proposal could address one problem while creating others. (Disability Scoop)
At Least 2 Million Children Have Lost Medicaid Insurance This Year (New York Times)
A New Tool Helps Disabled People Track—and Shape—Laws That Impact Them Plain-language documents can make information more accessible to people with disabilities that affect cognition and memory. (Mother Jones)
Runner Among First with Down Syndrome Ever to Finish NYC Marathon: ‘Victory Dance at the Finish Line’ 33-year-old Kayleigh Williamson, who has also run 20 half-marathons, completed the iconic race with her mom by her side. (msn.com)
Hallmark Movies & Mysteries Shines a Light on Autism in ‘A World Record Christmas’ They’re heeeere and by that, I mean Hallmark’s Christmas movies. (Parade)
So, you’re loved one has been determined eligible for services from the New York State Office for People with Developmental Disabilities (OPWDD) and there is talk of the “Life Plan.” This document outlines a person’s goals and desired outcomes, habilitation goals, clinical and support needs and more. It changes as the needs of the person change. (See “What is the Life Plan.“)