Inclusivity Means All: How Amaana Serves the New Orleans Muslim Disability Community
Ever since 21-year-old Ayya aged out of school, her mother, Manar Jaber, had been trying to find adult day programs and engaging activities for her to join near their home in New Orleans. The key was that they’d need to accommodate her daughter’s physical and cognitive disabilities due to cerebral palsy while simultaneously providing a safe, fun, and appropriate environment.
But the pickings were slim, and the community of friends and activities Ayya had gained during her school years quickly faded. “After she graduated, she didn’t see any friends,” Jaber said. “I looked for a center to help keep her busy, and I saw two (adult day programs) in New Orleans, but they weren’t her match.”
In the United States, children legally transition into adulthood at the age of 18. This means adult day programs — centers across the country that offer adults with disabilities opportunities to experience various activities supported by direct support providers, or DSPs — can serve clients ranging from late teens to senior citizens. And that was just one of the concerns Jaber had for Ayya.
“I understand that after 18, they’re all adults. But sometimes there are 20-year-olds mixed in with 50- to 60-year-olds,” said Jaber. “It’s hard for her to be with others who may like reading, puzzles, or playing chess. It’s hard for her to find matching friends.”
Beyond that was a bigger concern: Making sure her daughter was in an environment that would safeguard and respect the religious and cultural morals with which she had grown up. And, if she dared to dream big, a program that helped build pathways supporting her sacred right to accessible religious spaces and activities.
Breaking Down the Numbers
According to the Disability & Health Data System, 1 in 3 adults — about 1.26 million total — in Louisiana have a disability. Nearly 20 percent of these adults have a cognitive disability, while 16 percent present with a physical disability. And ten percent face serious issues with their ability to live and function independently.
Nearly a fourth of the New Orleans residents, or about 102,122 people, live with disabilities, including cognitive, sensory, physical, and mental health challenges. Agencies like the Office for Citizens with Developmental Disabilities (OCDD), the Governor’s Office of Disability Affairs (GODA), and advocacy groups like the ARC of Greater New Orleans and Disability Rights Louisiana (DRLA) offer services to support this diverse population.
But the number of entities offering support services belies the story of what disability living is often like. Even with increased awareness within the state and throughout the country, and efforts to change perceptions and build sustainable support systems across lifespans, the challenges can feel insurmountable. The grind of living with disabilities in this country involves: fighting for support and mental and physical autonomy, accessibility problems, a caregiving crisis, and issues with authentic inclusion.
According to Pew Research and the U.S. Census Bureau data from 2021, nearly 43 million Americans live with disability — about 13 percent of the civilian noninstitutionalized population. And what most of us don’t realize is that as we age, disability becomes a more profound reality. Some 46 percent of Americans 75 or older have a disability.
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Many of us think disability won’t affect us or our loved ones, but there is significant quantitative evidence to the contrary. And whether we are living or caring for someone with a disability, safeguarding and centering humans’ sacred right to respect and dignity is both paramount and an ongoing challenge.
Beyond that, people with disabilities and their families face perpetual challenges in accessing faith practices. A common refrain in various faith communities is how their loved one’s personhood isn’t respected or valued, and how religious leadership often doesn’t understand the sacredness of everyone’s right to inclusion and worship.
In more than two decades of covering faith and disability, as well as chronicling my own family’s faith experiences regarding my son’s profound autism, several challenges remain. Most notable have been helping faith communities recognize that individuals with disabilities and their families are worthy of inclusion, and the struggle to break down cultural and religious stigma around disability so families can find their sacred place in faith practices.
For Jaber, things changed when she met disability advocates and parents Rawida Abdulkhalil and Rana Ottallah, who introduced her to Amaana — American Muslims for Accessibility, Advocacy, and Nurturing Acceptance. Shortly after, her daughter Ayya’s world blossomed in ways her mother had long prayed it would.
Amaana, a Muslim community center located on the West Bank of New Orleans, is empowering and supporting the needs of Louisiana Muslim disability families and individuals through religious- and culturally-literate programming, educational advocacy, parent training, and targeted community events. It also partners with mosques and other local Muslim and disability organizations to destigmatize disability in Arab and Muslim communities, encourage families to embrace the support services available to them, and engage with their communities at large.
In so doing, Abdulkhalil, Ottallah, and their team at Amaana are providing crucial opportunities for these individuals and families. Amaana helps them build connections within Muslim and Arab spaces where they feel comfortable and engaged, while preparing and encouraging them to seek state services and integration into larger New Orleans-based communities.
When it comes to how faith and disability coexist in the United States, the story of Amaana rises far above the status quo. For those of us who have been walking this path, trying to get our faith communities and houses of worship to understand the fundamental and sacred right to be seen as whole and worthy of faith accommodations, Amaana is a beacon of what can and should be.
When Lack of Cultural and Religious Literacy Impedes Access to Disability Support Services and Programming
While government-based support services, agencies, and disability organizations reside in all 50 states, the variety, amount, quality, and accessibility of these supports vastly vary from state to state. This depends on several factors, including access to Medicaid and Medicaid waivers, rate of pay for DSPs (which affects staff turnover at many of these programs), and state budget priorities and allocations for disability services.
Before Amaana came into existence, Ottallah served on the board of directors of Muhsen, a national Muslim disability organization dedicated to making Muslim spaces more inclusive, as well as the Chapter Lead for Muhsen-NOLA (New Orleans, Louisiana).
Muhsen-NOLA, which is now defunct, served numerous Muslim families with disabilities, but they wanted the autonomy to build their own organization with a brick-and-mortar location. This would give them the ability to hyper-localize services and help make New Orleans-based Muslim spaces more inclusive, but also educate families on how to navigate their local school systems and seek support services that could help across the span of a lifetime.
Abukhalil and Ottallah saw how local New Orleans Muslim families with disabilities struggled to access the support and education they needed.
While national Muslim disability organizations, like Muhsen, have made tremendous strides to destigmatize disability and make Muslim spaces more inclusive on the whole, Abukhalil and Ottallah saw that on a local level, families continued to struggle to have their needs met and still felt unseen. Especially those whose disabled loved ones had transitioned into adulthood.
Once an individual reaches adulthood and/or ages out of the school system (at around 22 years old), support services and adult-based programming drastically reduce. Those in the disability world refer to this as “dropping off the cliff.”
For some, this period is coupled with complications stemming from cultural and religious-based stigma, which makes building a respectful, dignified, and meaningful life all the more difficult.
Sheikh Yousef Bakeer, an imam at the Valley Ranch Islamic Center in Dallas, Texas, was introduced to Abukhalil and Ottallah at a fundraising event in Louisiana. Bakeer, whose seven-year-old daughter is autistic, was immediately drawn to the work the women were doing in New Orleans. Bakeer said finding resources and support services has always been a struggle for his family, and even more so in Muslim communities.
“It was easier not to bring my family [to the mosque or other events] — and that’s not right,” Bakeer said. “We should have support, where you can enjoy your ibadah (worship) and the social gatherings without having this as an obstacle.”
I’m reminded of several experiences our own family has had in religious spaces, including one year when I approached the Shura (leadership) council at a local mosque. I requested that they hold a later prayer service on Eid ul Adha to accommodate not only our family, but others who have elder family members and struggle to make it to early morning congregational Eid prayers. The two annual Eid prayers are the only prayer service our entire family attends together, and I didn’t want us to miss out. My request was rejected, citing the lack of numbers to support having a second jamaat (congregational prayers). Instead of leaving our son home with a caregiver so we could attend Eid prayers, most of us decided to stay home that year.
When religious leadership doesn’t view someone as equal or worthy of inclusion, they are blinded to the sacredness of every being, of everyone having the opportunity to live a life of faith with worship practices. “We all deserve to be part of a faith community, to be able to go to the mosque, to be able to worship Allah however possible,” said Bakeer.
The alternative is empowering individuals with disabilities and their families to demand better for themselves, in their faith communities and across the spectrum of their lives in ways that can accommodate their disability as well as their religious and cultural living. One doesn’t have to be sacrificed for the other. This is another area that particularly seems to affect Muslim, South and East Asian, and MENA (Middle East and North African) disability families.
In my years chronicling my family’s autism living on the Patheos blog, The Muslimah Next Door, and in other media outlets, countless Muslim families have reached out seeking advice on seeking school services and government support. But most importantly, they wanted to know how we chose to be loud, proud, unapologetic, and authentic about navigating our multitude of worlds as an American Muslim, South Asian, and autism family. How did we know whom to ask for support? What support to ask for? How to demand inclusivity? How to maintain our Muslim values while doing all of this?
In studying the New Orleans disability landscape, especially when it came to Muslim families, Ottallah and Abukhalil noticed that families were faltering in accessing the services they needed, often not understanding how to ask for support, work the system, build community with others like them, and learn from each other, and access spaces where they felt supported. Where they could be their sacred and authentic selves.
For my family, it came down to seeking education wherever possible and aligning ourselves with disability organizations from whom we could learn and gain empowerment. The challenge for us, though, was that no single organization or support network fit our multi-hyphenated family. We had to Scotch tape a system that worked for us.
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Ottallah, whose now-adult daughter Dalia was born with a hearing impairment, went back to school to get her associate’s degree when her children were young. “That’s what changed me,” Ottallah said. “If I’m able to raise four kids, then I have so much to give.”
In preschool, Ottallah was told by the school’s principal that they didn’t have room for a deaf student. “I was not going to put her on a special bus,” Ottallah said. “She was going to go where her siblings were.” At the time, she didn’t know how Individual Education Plans, or IEPs, worked, and began educating herself about disability services in Louisiana. By 2012, she was helping families at a Parent Training Information Center, which housed a grant-funded “families helping families” program that employed Ottallah because Jefferson Parish had a high number of Muslims and Arabic-speaking families.
She then went to serve on Louisiana’s Special Education Advisory Panel and worked with Hands & Voices, Support and Training to help families with educational advocacy. From there, Ottallah continued freelance advocacy work, conducted disability rights training, and attended a Partners in Policy Making six-month leadership program.
Ottallah quickly learned how challenging it was for families to navigate disability support systems, especially when therapists often didn’t understand how religion and culture shaped family routines and activities of daily learnings (ADLs). So Ottallah and Abukhalil spent their parenting lives fiercely advocating for appropriate education and support services. They knew disability was nothing shameful or limiting.
“We had an amaana to help fellow disability families feel included as Muslims, as humans, and as families who can find the support they need across all areas of life,” Ottallah said. In Islam, amaana is a trust — a sacred responsibility Muslims owe themselves in all aspects of their lives to respect what they are given, live authentically, and fight for those who need support.
This is why the organization’s volunteers unanimously voted to name it Amaana — because of the sacred responsibility they felt in building trust with fellow Muslim (and non-Muslim) families with disabilities to help them navigate all challenges across a lifespan.
Ottallah had realized that unless she did something to help Muslim disability families in her communities, their voices wouldn’t be heard. “I have a voice to impact people,” she said. “So I asked myself, ‘What about Islam? What about Muslims with disabilities? What about Arab Americans in New Orleans with disabilities?’ If we don’t have a seat at the table, we have to create the table, and I think Amaana is that table.”
Equipping Muslim and Arab Disability Families to Advocate for Themselves with Faith-Based Support
Disability is often stigmatized in various MENA and South and East Asian cultures, and in faith communities, in general. A 2024 survey of 2000 American adults by the American Psychiatric Association (APA) found that while 60 percent agreed that faith or spirituality was an important factor in supporting mental wellness, about 50 percent who belong to a religious community said theirs doesn’t discuss disability and mental health without stigma. And 68 percent said they would likely seek mental health or disability care only if a leader in their religious community recommended it.
Organizations like Muhsen, Dar ul Sakinah in Texas, Global Deaf Muslims, EquallyAble Foundation, and others have worked tirelessly to bridge the gaps in these communities. But numerous Muslim and Arab disability advocates agree that the work to destigmatize disability in Muslim spaces and empower families to find or demand appropriate support continues to be staggering.
“There is still a lack of awareness of kids with disabilities, and a lack of awareness of the kinds of disabilities that people have. It is a huge struggle,” Bakeer said. “As a result, it is very difficult to even engage in regular activities that many families enjoy in general. And I’m an imam; I’m at the masjid every day. I was struggling with finding a space where I could fully enjoy these events and be with the community with my family.
Bakeer’s experiences are extremely familiar to Ottallah and Abukhalil.
Over the years, they’ve been approached countless times by Muslim families or introduced to Muslim or Arab families in New Orleans by social workers, therapists, special education administrators, and educators who want to help these families but struggle to build trust or make meaningful connections.
Abukhalil struggled and fought for years to obtain the best services and support for her 26-year-old autistic daughter, Nejweh. She was diagnosed at age three and started receiving speech therapy and early intervention. Due to complex behavior issues, Nejweh switched schools several times until Abukhalil decided to move her family from Jefferson to Plaquemines Parish for better educational support.
Abukhalil recalled how her family and Muslim friends advised her against the move, saying Plaquemines was prejudiced. She was one of the first hijab-wearing Muslims in the parish, and she feels the move benefited her as much as her daughter. “I became a walking advertisement for Islam,” she said.
Nejweh stayed in Plaquemines schools, graduating and aging out when she turned 22. Since then, she has spent all her time with her mother. “I put her in [adult day programming], but it hurt me so much to leave her there,” Abukhalil said. “She was with grown men, some of them suffering from PTSD.” She worried, knowing that her daughter didn’t understand boundaries. “She doesn’t know ikhlas (purity of intention) and the moral boundaries of Islam. I can’t expect that of her and a regular adult day program. So I really wanted something Islamically-based,” Abukhalil said.
When disability overlaps with faith, of any kind, it can feel like there are impenetrable roadblocks for families who are desperate for appropriate support and settings for their disabled children. Especially when they also need their faith communities to accommodate disabilities.
Ottallah said that in New Orleans, no agency or organization had the religious, cultural, and language competencies to care for Muslim and Arab disability families. She recalled a situation where an imam had four children with hearing loss, three of whom were also autistic. Ottallah was called to build a bridge of understanding between the parents, children, and service providers.
“The ABA therapist wanted to know why she needed to take off her shoes when walking into a Muslim household. I explained that people pray everywhere, and the shoes bring in their dirt,” Ottallah said. “There are hundreds and hundreds of stories like these. There is a black hole when it comes to language and cultural competencies, and language barriers when it comes to Middle Eastern families. So the need exists, and the more we work with families, the more need we see.”
In more than two decades of disability reporting and engaging in autism advocacy work, I have to agree with Ottallah’s assessment. Everyone involved in disability support structure — educators, administrators, therapists, agencies, religious leadership, and organizations who possess both disability inclusion/support and religious, language, and cultural competencies — has room to become more inclusive. To see and honor the sacredness of every being, and to take a humanity-centered approach to bridging gaps between navigating disability and dignity. This will be the key to helping marginalized families living with disabilities feel empowered. And to not only accept help and support, but seek it and even demand it for themselves.
How Amaana Accommodates the Needs of Muslim Disability Families
Armed with their knowledge and experiences, Ottallah and Abukhalil focused on getting Muslim and disability partners on board to help local Muslim disability families find religiously- and culturally-literate programming. The goal was to empower them to seek educational, governmental, and faith-based support. And they found a physical location for their organization, so individuals with disabilities had the opportunity to partake in disability programming couched in Islamic principles.
Their passion was fueled by the potential they saw in combining disability empowerment with destigmatization and removing shame. As Bakeer said, “disability isn’t an indication of displeasure from God or any sort of punishment.”This is what families needed to understand.
The proof of their work is in the numbers. In 2024, Amaana served 120 Muslim families, a 50 percent increase since its inception the year prior. The staff attended 28 percent more IEP meetings with Amaana families in 2024, and respite care grew by 177 percent. They provide an adult day program twice a week for free, and facilitate disability-friendly Eid prayers at a local mosque. They also prioritize school advocacy meetings and training, with language assistance at these meetings doubling from 2023 to 2024.
This all goes to show that Ottallah and Abukhalil are onto something: by focusing on the sacredness of every human, Muslim and disability partners come to the table and jointly create a hyper-localized approach to providing support across all aspects of disability living. This, in turn, gets buy-in from families who need this help the most. The result is families like Ayya and Manar Jaber’s seeing Amaana and its bridge of work as the fundamental solution to help them live their most authentic and best lives between disability, faith, and all other aspects of their lives.
This is what happens when you empower individuals living with disabilities and their entire communities: they finally see themselves as absolutely deserving to live their fullest lives. This lays the critical groundwork for a life rooted in the sacredness of humanity.
In its first two years, Amaana has paved the way to provide much-needed support and education to Muslim disability families in Louisiana — those who were otherwise lost, unable to fully navigate local school systems, and were hidden behind unnecessary faith-based stigma. “I wish Amaana could be replicated in every state,” Bakeer said.
Amaana’s growth has been a big step for Muslim disabled individuals in New Orleans. “For 21 years, we never had the choice until Amaana opened. I never met other Muslim adults and special needs children until Amaana – that definitely (is indicative of) parents keeping to themselves,” Bakeer said. “I know I always wanted to introduce my daughter to family and community – whatever Allah gives us, you have to be happy with. So, why should she be at home when she can be at Amaana?”
By Dilshad D. Ali