Join the #DisabilityKhutba Campaign in Our Push for Inclusion, Recognition and Acceptance

By: Dilshad Ali

Originally published on the Muslim Channel, Muslimah Next Door, in Patheos

“He (Musa) said: ‘Oh my Lord! Expand my breast for me and make my affair easy to me, and loose the knot from my tongue (that) they may understand my word … (Quran 20:25:28)”

We are committed to owning our own narratives and taking action in many worthy arenas. But what about the most vulnerable in our communities? What of their families? What about the spiritual struggles of families with special needs — embracing them, including them, connecting them to resources, helping them in the myriad of ways that they need help? What are we doing for Muslims dealing with special needs?

 Not much. And that’s unacceptable for our Ummah.

 I wrote those words more than three years ago during a time when I was a year and a half into chronicling my son’s and our family’s autism journey and harboring more than a decade’s worth of frustration at the lack of our Muslim communities’ inclusion and support of Muslims with intellectual and physical disabilities.

Frustration at my son being left out. Our family being left out. Our needs not being recognized and more so, when we made attempts to join various masjids for Jummah prayers or various halaqas/events, unknowing members of the congregation made us feel less than welcome.

But the landscape is different now. Not vastly so, but the proverbial tides are definitely changing. Awareness is growing and various organizations have made significant headway in helping masjids create a more inclusive environment for people with disabilities, in informing general Muslim communities on the various struggles their disabled brothers and sisters are living with and helping disabled Muslims and their families get connected to more support services.

But there is so much more to be done, so much more growth and change needed. Sometimes we get down about awareness, thinking that our focus must be on action. But the reality in our Muslim communities is that both are needed.

Now, the #DisabilityKhutba campaign is giving us all the chance to participate in disability awareness and action. Join us in urging your masjid to give a #DisabilityKhutba this Friday, October 28th. Check out the EquallyAble website :

EquallyAble, along with a number of other national organizations is calling for observing Friday, October 28, 2016 as the  #DisabilityKhutba Observance Day. #DisabilityKhutba is a national khutba awareness campaign hosted by a coalition of like-minded organizations that are working towards the empowerment of people with disabilities and their families in the U.S. and around the world. The campaign will begin in October, which is Disability Awareness Month in the U.S., and run through December to mark International Disability Day. Towards this end, Friday, October 28th is designated as #DisabilityKhutba Observance Day, a day where people will come together to honor those with disabilities and to promote their inclusion in society.

We are thankful to the Islamic Society of North America (ISNA), the Islamic Circle of North America (ICNA), the Muslim American Society DC, ProjectSakina, the Texas Muslim Women Foundation (TMWF), American Muslim Health Professionals (AMHP) EnabledMuslim, MUHSEN, SMILE, and Global Deaf Muslim for their feedback, support, encouragement, and for endorsing the Understanding Disability in Islam guide and this campaign. EquallyAble is also thankful to the many speakers, presenters, and scholars that took inspiration from the Understanding Disability in Islam guide to conduct khutbas, seminars, and presentations.

We need your help to make this a success. We need your help to turn the dial further to help make our Muslim communities more aware, more inclusive and more embracing of those with disabilities and special needs and their families.

Click here to learn more about the campaign.

Click here to join the Facebook event.

Use the #DisabilityKhutba hashtag this week to tweet on this topic – about what you want to know, what you’d like to hear, if your masjid gave a disability khutba and so on.

Help us in our struggle for real, meaningful – not token – inclusion.


The Year to Vote: The Urgency to Exercise Your Rights

This election year has been followed by more people in years passed. Candidates have taken us on a ride of promises, disappointments, hopes, and possibilities. But what has been made clearer than ever before is the power in voting and the absolute need to exercise that right. Minority groups have been a popular topic amongst candidates, discussing our purposes, our contributions and how integrated we are in our communities and the country.

We can only begin to address these questions, and the many others, by advocating for ourselves in local and national levels of policy. By voting, we will not only take part in our basic rights but enact others to take notice of and address our needs. We will be a part of the legal process that bind and release us from our limitations.

Be present now in the process that will grant you independence, a voice, and act on the right to vote. Tuesday, September 27 is National Voter Registration Day. The onus lies on you to register yourself to vote in order to be present in your future. Contact me, Kiran Ahmad, at enabledmuslim@amhp.us for help with registering to vote.


EnabledMuslim Adviser Dilshad D. Ali Writes about EM

Sometimes I wonder – what does it matter to him, whether he sets foot in any type of masjid/mosque? My son is definitely unMosqued, as is my entire immediate family, to some degree. Oh, we go to events and Jummah prayers at a mosque where we live, but that connection, that sense of belonging that feeling of strong community? – Yeah, not so much.

By this point in our lives, though I want for our mosques and our communities to grow more inclusive of individuals with special needs and their families, to have the right kind of accommodations in place, to approach each other from a place of love and respect –it’s not something I agonize for us anymore.

It’s the little things that grab my heart and cause my breath to choke. Things that remind me that in his infinite patience, joy, strength and wisdom, my son still struggles every day. The challenges never stop for him, the worries never cease for me. One can chalk this up to clichés of parenting. But it’s so much more.

Last week he got a cut on his middle finger. By the time I saw it, he had worried and picked it into a sensitive, gaping wound on his finger tip. The surrounding skin became swollen, and liquid was starting to ooze. My thoughts raced from how could I have missed this? to how do I get him to keep a bandage on this? to how will it heal?to what if the infection spreads?

Like many individuals with autism (remembering that autism is a spectrum and it manifests differently in everyone), Lil D has a high pain tolerance. Two weeks back when I went to get him from school, he came to me with his face all banged up like he had gone a few rounds with a prize fighter. Scratches on the side of his face, large bumps on his forehead – I felt sucker punched. The cause? A meltdown during lunch, resulting in some head banging.

I asked his teachers – did you give him Motrin? (We have a health note to administer Motrin as needed). No, they responded. He didn’t seem like he was in pain.

Oh, he was in pain.

Now with his finger? There was visible signs of pain. Every time I have put antibiotic ream on it and bandaged it up, he has winced and cried out in pain. When I take the bandages off at night to let the air help scab it up, he is visibly unsettled and sensitive to it touching anything.

When I picked him up at school this week, there were marks on the side of his face. He has this intermittent, worrisome habit of taking his thumbnails and picking at the skin on the side of his eyes until there is a raw, rubbed area on both sides. By the time I work to distract his fingers and help the wounds scab up and heal over, it’ll start all over again.

These are the things are some of the things I think about, worry about. And I know I’m rambling here, but stay with me. Here I am at the 51st annual Islamic Society of Northern American convention in Detroit to speak about how to make our mosques and communities more inclusive special needs families and individuals – I worry about being away from Lil D, from his younger siblings A and H, about his finger and his face.

I’ve been chronicling our life and autism journey for four years now, and yet I haven’t even begun to capture the minute and major ways autism affects and dictates Lil D, and in turn, our lives. All that is good, all that is so very difficult from daily living to family time, to our relationships with each other, to stigmas that remain, to how we try to rely on our faith to carry each other through.

And time and time again, I look at my son and think, he is just so beyond all this. He is living here with us, but his akhirat, his happily ever after is just waiting for him. It has to be. And God-willing he’ll take us there with him. So why this stress over being unMosqued, or the place of a mosque in our lives? Why is this so important? Because we are but one family. There are so many more.

Enabling All Muslims

About six months ago I received an email from my friend Maggie Siddiqui about an exciting and much-needed endeavor she was embarking on through the support of American Muslim Health Professionals. Maggie and I had talked many times in the past about the lack of inclusion, support and resources for Muslims living with all sorts of disabilities as well as their caregivers.

She proposed an inclusive website connecting Muslims living with special needs with the right resources, support services, mentors and so much more. I was immediately intrigued. I’ve spent the better part of Lil D’s life stumbling through my research in trying to find the best of what is out there to help him and our whole family.

So many others just don’t know where to go.

She put together a great advisory group, and we spent some time mulling over what we would want in such a website and developing a survey to administer to Muslims with special needs as well as their families/caregivers. The results from that survey were surprising, and to some extent, they were not.

I mean, I know. I know because of years of trying to find our way, about how frustrating it is to figure out what is the right course of action to help a loved one with a disability. Where do we turn to? How do we find help? Who do we talk to? What happens when our loved ones, who cannot live independently, grow older? Who are the right physicians to see? How do we get grants and Medicaid waivers to help cut costs down? What is an IEP? How do we write one for our kids? What are their rights in this country? What do public and private schools have to offer? What is the best means of support? How can caregivers get support as well?

And this was just the drop in the bucket. What about in our mosques and Muslim communities? How do we address the spiritual frustrations of special needs individuals and families? What kind of accommodations are our mosques and community centers and Sunday/Islamic schools making? Do they even know what to do? How do we connect teachers, leaders in our mosques, scholars and imams to tackle these issues and bring them to the forefront?

Through diligence, never-ending detective work and sheer willpower, I have cobbled together the best answers I can for my child and continue to try and forge the most respectful, dignified and inclusive path for him in school and in the community.

It’s taken us 14 long, long years to get to where we are, and we are still just getting started, learning more every day of what’s out there. I don’t want it to be so hard for others. I mean – when you have a child or family member with a disability, of course you will become their strongest advocate.

But the journey shouldn’t have to feel so lonely. I started blogging about Lil D, which throws me into a tailspin every time as I struggle to balance being open about what he is dealing with in hopes of relieving the stigma of keeping quiet with respect for his (and our family’s privacy). But I feel it’s worth it. Muslims with disabilities and their families need to know that we are there for each other, that our community, our mosques, our teachers, imams and scholars are there for us. That’s whereEnabledMuslim comes into play.

We Matter

Alhamdulillah, with EnabledMuslim and other newly developed organizations tackle disability inclusion in the Muslim community; I finally feel that we are moving beyond the talk, beyond the awareness to a place of action.

In the coming months, as EnabledMuslim grows deeper in content and reach, I’ll write more about how it (and other endeavors) can be of help to all of us. Disability inclusion is not an issue to just be tackled by those of us directly living with special needs.

It is an issue for our entire Ummah to embrace with love and dedication.

It would’ve been sheer foolishness for me to bring Lil D here to ISNA in Detroit. His needs, tolerances, likes and dislikes don’t mesh at all with a convention atmosphere. And even ISNA has a ways to go to provide better inclusion for those with disabilities. But things are happening and Alhamdulillah for it all.

So my thoughts turn to him, to A and H, to Lil D’s finger, to the raw marks on his face, hoping his Baba and grandparents are keeping a close eye on it (I’m sure they are). My thoughts are on back-to -school, on our upcoming IEP (individual education plan) meeting in October, on hiring new therapists since two have left us. My thoughts are on A, who is starting middle school, and H, who is starting in a new school. My worries are not so much about our family’s unMosqued state of affairs. We’ll find our way, Insha’Allah.

But I want the rest of you to find your way as well. Let’s find it together.

Learn more about EnabledMuslim by visiting its website here. “Like” us on FaceBookhere, or follow us on Twitter @EnabledMuslim.

—–

This was originally posted on Patheos.com

 


“I’m having a hard time with my disability. What can I do?

You are not alone. Living with a disability can be more than just an important dimension of your identity—it can be empowering. However, sometimes it can also feel alienating or isolating. Having a disability is considered a minority status in the U.S., specifically because so many people’s needs and accommodations remain overlooked or ignored. As a result, it is completely normal to struggle when things are not easy, and there are resources to help you cope.

EnabledMuslim hopes to launch its online support network soon, though you can join our temporary support network here.  In addition, there are numerous mental health resources provided by and for Muslims. Mental health care is a crucial component of providing for our well-being, and if you are having a hard time, do not hesitate to seek help from a mental health care provider.

You can find help immediately by contacting these hotlines:

We also recommend finding a mental health provider near you. Many insurance plans include mental health care coverage, and can suggest local providers. Project Sakinah also offer a robust directory of local Muslim counseling services and other social services at projectsakinah.org.

In addition, other educational resources about Muslim mental health and maintaining healthy relationships include the following:

  • The Family & Youth Institute
  • The Journal of Muslim Mental Health 
    • From an American Muslim perspective, the Journal of Muslim Mental Health can provide more information about recent studies specifically related to mental health, stigma, and risk factors in the American Muslim community. (Note: many of these studies are concentrated on American Muslims of Arab and South Asian descent.)

Another way to combat the stigma your diagnosis/es is by checking out the resources from the Invisible Disabilities Association, an important reminder that not all disabilities can be seen or easily understood.

We are continuing to expand our resources for those who are having physical, social, or other difficulties with their disabilities, unrelated to mental health. If there is a specific resource you need or that you would like to recommend, please contact us here!


“I recently developed or was diagnosed with a disability. What resources are available for me?”

In the United States alone, over 1 in 5 people have a disability diagnosis. That’s over 50 million individuals. Many of these individuals are a part of our communities and an estimated minimum of 600,000 of them are American Muslims.

If you’ve just been diagnosed with or recently developed a disability, know that first of all, you are not alone. Local and national organizations and networks are here to help, and EnabledMuslim is the right place to get started.

First, remember that having a disability may have an impact on how you experience life, but it does not have an inherent impact on your value as a person. Numerous companions of the Prophet Muhammad (peace be upon him) lived with disabilities, whether they were born with them or developed them later in life. The Prophet praised many of them, as he did many of his companions who did not appear to have disabilities, and entrusted some with great responsibility. The value of each individual was not related to his/her disability, and we should not make the mistake of seeing ourselves in this way.

Remember that it is not your responsibility to educate others about how to treat you with dignity and meet your needs with your disability. But it is your right to be able to understand the specifics of your disability and feel comfortable sharing that knowledge with others as you choose. EnabledMuslim is here to help you get started on that path of self-education by providing you with guidance and resources. If you are looking for a resource, and it is not on the list below, let us know!

According to the American Association of People with Disabilities, a disability is a permanent physical, sensory or intellectual impairment that substantially affects one or more of a person’s major life activities. (Adapted from AAPD.com, 7/2/14.) There are many different types of disability. Here are some resources about what the term “disability” means and how different disabilities are classified:

Information about Disabilities

Government Entitlements and Benefits

Know your rights:

  • What is the Achieving a Better Life Experience Act (ABLE)?
    • Passed in 2014, this Act will allow people with disabilities (with an age of onset up to 26 years old) and their families the opportunity to create a tax-exempt savings account that can be used for maintaining health, independence and quality of life. Read more and find the answers to Frequently Asked Questions here.
  • What is the Affordable Care Act (ACA)?
    • According to the Department of Health and Human Services, “The Affordable Care Act puts consumers back in charge of their health care. Under the law, a new “Patient’s Bill of Rights” gives the American people the stability and flexibility they need to make informed choices about their health.” Read about its key features here.
    • Check out American Muslim Health Professionals’ extensive list of links and information about the Act and how to get covered.
  • What is the Americans with Disabilities Act (ADA)?
    • Passed in 1990, the ADA prohibits discrimination against people with disabilities in employment, transportation, public accommodation, communications, and governmental activities. The ADA also establishes requirements for telecommunications relay services.
  • What is the Consolidated Omnibus Budget Reconciliation Act (COBRA)?
    • COBRA requires group health plans to provide a temporary continuation of group health coverage that otherwise might be terminated.
  • What is the Health Insurance Portability and Accountability Act (HIPAA)?
    • Passed in 1986, the primary goal of this law is to make it easier for people to keep health insurance, protect the confidentiality and security of healthcare information and help the healthcare industry control administrative costs.
    • The Office for Civil Rights enforces the HIPAA Privacy Rule, which protects the privacy of individually identifiable health information; the HIPAA Security Rule, which sets national standards for the security of electronic protected health information; the HIPAA Breach Notification Rule, which requires covered entities and business associates to provide notification following a breach of unsecured protected health information; and the confidentiality provisions of the Patient Safety Rule, which protect identifiable information being used to analyze patient safety events and improve patient safety.


Living with Blindness: Lessons from the Life of Imran Sabir

Cover of book called Living with BlindnessLiving with Blindness: Lessons from the Life of Imran Sabir, is a book about “an exceptional young man. It is a tale of steadfastness in the face of adversity, discrimination and disadvantage. Imran succeeded in his struggle to find his faith and identity. His journey sets out many lessons about religion, society, communities and personal development.” It was written by Abdul Aziz Ahmed and published in 2009 by Islamic Texts for the Blind.

In the foreword of the book, American Muslim scholar Imam Zaid Shakir wrote:

Although he was afflicted with a wide array of crushing physical challenges that would rob him of his mobility, his eyesight, his speech, his teeth, and nearly his very breath, as he spent most of his life breathing through a tracheosmy tube, he could not be denied the ability to make a rich contribution to society during his short lifetime. Imran was able to overcome the challenges he faced physically, as a result of his battle with LOGIC Syndrome, by developing himself spiritually and intellectually. By so doing, he was able to tap into a deep, pure river of humanity that brought forth the character, talents, and an indomitable love of life that so deeply touched all who knew him.


“We Will Not Be Hidden” Video Documentary

Screenshot of "We Will Not Be Hidden" videoThis 2009 video documentary features the lives and realities of Muslims with disabilities and their families living in North America. It includes notable Muslims like tennis athlete Atif Moon and U.S. government attorney Mazen Basrawi, among many others. The video consists of three parts and includes captions.


Some Steps to Help Make Your Masjid and Community Center More Inclusive

Muslim woman reading braille; title is ISNA ConventionAt the 2012 Convention of the Islamic Society of North America (ISNA), speakers on a panel entitled, “Improving Inclusion and Accessibility for Muslims with Disabilities,” created and shared a guide entitled, “Where Do We Go From Here?” The guide provides some helpful tips about how to make your mosque or Islamic community center more inclusive of people with disabilities.