This past weekend I had the honor of moderating what I thought was the most important panel at the 52nd Annual Islamic Society of North American convention. Our panel was title “Finding Our Voice: Sharing our Disability Experiences to Seek Empowerment and Affect Change,” and featured Inshirah Aleem, an author and woman living with bipolar disorder, Safiyyah Amina Muhammad, a mom to five and fierce autism advocate/community leader, Sara Minkara, founder of Empowerment Through Integration, an international non-profit that integrates blind youth in developing countries into society, who has been blind since the age of seven and renowned scholar Sheikh Omar Suleiman, a co-founder of MUHSEN.
Here is an extended version of my opening remarks about why it’s so important for those living with special needs as well as their loved ones to share our stories, to be public, to no longer hide and to demand the support and respect we deserve.
The truth of it is – it’s very hard to tell the truth of your own story. To share the private details of your life in order to maybe find a little cathartic cleansing, or reach out to others who are feeling alone in their struggles, or to affect change. Living with special needs or disabilities is a special kind of living – more challenging and more real, forcing us to confront hard truths about ourselves and about the world we live in. And, when we then choose to share our stories, we become vulnerable to what the world may think about us.
And yet we do it. We must do it. Because in four years of sharing my son’s story and our family’s story, as hard and tricky and difficult as it is, the biggest thing I’ve learned that there is power and beauty in honest and careful sharing. People feel less alone. People learn how to cope and make things better. And powerful change can occur. My 15 year old son D is profoundly autistic. But he has a story to tell and has difficulty telling it himself. And so I will help to tell it.
Some of us who are living with special needs or disabilities share our own stories. We are the owners of what we say, and we fight to see that change happen that needs to happen. Others, caregivers of those lovely souls who have difficulty speaking for themselves, become ghost writers. Our job is even more delicate – because while we cannot truly speak FOR another, we can try and share their stories in a dignified, real, honest and respectful way.
I want you to meet four remarkable individuals, some living with disabilities, or different-abilities, some working to help the special needs community. Some of us own our own stories, others among us are ghostwriters.
And although disability awareness has grown in the Muslim community in the past five years, many Muslim families and individuals living with disabilities still report feeling silenced and unwelcoming, facing stigma, shame and exclusion. In a time when the mantra of the American Muslim community is owning our own narratives and amplifying our concerns to affect change, how do we encourage those with disabilities to raise their voices, and others to listen?
Why is it so important for our voices to be heard? Because there is power and honesty in the sharing of our stories. Because change won’t occur in how we are treated and how our masjids, communities, friends and families see us unless we speak up.
Four years ago, after working as a journalist/editor at the time for a decade, I wrote a very private, very personal essay for Wajahat Ali’s “Spiritual Appetite” Ramadan guest blog on Patheos. It was the first time I had ever written so personally about my son and autism. I wrote these words:
When I see D beating himself, wailing and crying for hours on end, when he exhausts himself to sleep only to wake up and start it all over again, when I see him work so hard to manage his autism, when I see his frustration because I cannot understand him, when I, his mother, cannot fix his problems, then the struggle overwhelms me, and I question Allah. I question my prayers. I question what my fasting means. I question why I cannot seem to give more to Allah.
I ask this question: Is D suffering because I am not good enough in Allah’s eyes?
And it was like opening Pandora’s box. I do not ask that question (well, hardly) anymore. The past four years has been as much about how far D, our family and myself have come in our autism journey as it has been about how far the Muslim community has come.
The other night, while cooking dinner, my husband asked me if I knew anyone through my connections who could give advice about adopting orphans from Syria, that his friend was seriously interested in doing so. I told him I’d have to think and see who could help. We remarked to each other how much we’d like to adopt/take in an orphan as well, if we weren’t so fully engaged and taken up in our parenting responsibilities for D and our other two kids. And my husband said,
That’s what D has taught us, you know? I think that if D wasn’t autistic, if he didn’t have all the challenges and things he has to live with and go through, we wouldn’t be as compassionate as we are now. I mean, I think we’re pretty nice to begin with, but the level of compassion we feel and help we want to give everyone – D taught me that. D taught you that. I think D has taught so many that – how important it is to treat everyone with dignity and respect. How important it is to be compassionate and caring and to help others as much as possible.
It’s true. I really believe it’s true. And, while the struggle has been so much for D and he’s endured so much pain, this has been one of the biggest life lessons. Would I call autism a gift? No. And that’s an entirely separate and complicated post that I may never write. But sharing D’s autism, with his permission (as best as I can get it) has had a profound affect I believe on us and on many others.
And that’s why we share.
That’s why, when Sara said in her talk at the panel, that she has always prayed to God to give to her that which will bring her closer to Him, that her blindness has done that — there was not a dry eye in the audience.
That’s why when Sheikh Omar, who lost his words after hearing Sara speak, said, I would argue that our sister, despite losing her vision, can see a lot better than the rest of us, we all wholeheartedly agreed.
That’s why, when Inshirah said that being vocal and public about her struggle with bipolar disorder has led others who also have bipolar to reach out to her and feel less alone, that the audience nodded in collective agreement.
That’s why when Safiyyah Amina advised the parents and caregivers in the audience to rise up and become advocates for their children and to demand what their children deserve from the school system, from government agencies and from our religious community, so many were nodding.
We will get nowhere unless we share our stories. Because it is through this sharing that we make connections, which leads to thinking, which leads to organizing, which leads to, inshaAllah, positive change.
I share our joys, our daily happiness and our triumphs. I also share (as respectfully as possible because this is D’s story first), the dark days, the hard times, the questions, the struggles and the challenges.
Because it is all real. It is all valid.
And you need to hear it.