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ISNA Disability Narratives – Being a Voice for Advocacy and Change

ISNA Disability Narratives – Being a Voice for Advocacy and Change

Last updated on: September 1, 2015 at 1:29 pm by Dilshad Ali

ISNA Disability Narratives – Being a Voice for Advocacy and Change 2015-09-01T13:29:00-04:00 Dilshad Ali

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This post is part of a short series of disability narratives shared by the speakers and moderator (me!), who will be part of a panel discussion on “Finding Our Voice: Sharing our Disability Experiences to Seek Empowerment and Affect Change” this Saturday at the Islamic Society of North America convention. We’re hoping to show how sharing our stories is a way to build community and change perceptions.

By Safiyyah Amina Muhammad

I feel that my story is a compelling share because, out of the five children I gave birth to, three of my sons have various ranges of autism spectrum disorder. I’ve also raised a (now) adult son who struggled with mental health and behavioral challenges throughout adolescence.

Years ago, while sorting out my then two-year-old son’s autism and struggling to get supports and services for my then teenaged son, I found myself also experiencing bouts of post-partum depression. I felt like I may have been dwelling in that dark space for 10 years, but I STILL had to maintain a balanced life for my children and family.

That wasn’t easy.

Changes came gradually by the mercy of Allah SWT hearing my cries and my du’a. Changes came by me educating myself first through attending PTA meetings, parent workshops, conferences and events and so on, and my determination to define what the best quality of life would look like for my children. Changes came from me working work hard and empowering myself to educate family and friends.

I eventually began volunteering in my children’s schools. This led to my educating other parents as well as becoming a special education advocate for wards of the state. I began attending out of state conferences and finding that disability disparities were similar everywhere.

The ride wasn’t easy for my family. It was filled with lots of frustration and making very harsh and heartbreaking decisions like, placing my eldest in a residential program. It was extremely difficult to find the right doctor and prognosis for my sons with autism. By then, the “system” had already failed my oldest child.

It was a struggle to find the right medication to subdue my eldest son’s violent behavior. No one believed me. I followed up with three neuro-developmental specialists before the doctor told me something that I already knew from watching Doug Flutie and his son on a late night television commercial discussing the Doug Flutie Foundation for Autism: It is difficult to find an appropriate school setting. It is difficult to balance the lives of all of the other children, and most of all, it is difficult finding ways to keep my marriage intact.

Why I Share

I share my story for parents of children with special needs, but also as importantly for the parent whose typically developing child is feeling left out — because kids with special needs get special attention. So I dedicate 2-3 times per week to reconnect with my only daughter. I share my story because parents who think that they’re alone are not.

For example — buying several brands, styles and flavors of some of the same products seem like a ridiculous thing. But when you have boys on the spectrum, their taste buds are so acute. I can spend three times the average on groceries just to appease them. If you don’t buy what they like, they don’t eat. Maybe this is familiar to you in your special needs parenting. If so, you’re not alone.

I share for the parents who don’t know why their child is strippin, whether in public or private — because the fabric, the tag or the detergent just doesn’t cut it.

The Power of Choice

No matter what goes on in my children’s lives, I’ve learned that I have a voice, and I have choices.

When they were younger, I was so empowered and so impassioned about making internal changes for my children in the home. But as they got older, I saw another disparity: Gaps in services from schools and local/state governmental agencies. The bigger the gap, the bigger the advocate I became for my children and other people who couldn’t fight the good fight alone.

I was never one to boast entitlement; so I began movements to get answers from legislators about they why we, as families, felt that there was little to no transparency throughout the state for respite care, occupational therapies, physical therapies, behavioral support, etc. Reciprocal peer support was one thing I was especially committed to, especially in the creation of transparency.

Because parents need to know we’re not alone. My child leaps out of windows and bolts. My child throws tantrums and throws things. I learned how to be an active, attentive ear in guiding parents to the resources that they need to help their children manage their struggles.

Having multiple children whose autism manifests in profoundly different ways is one of Allah’s greatest tests of my character; it’s also my biggest blessing. In spite of the meltdowns in the middle of the store or the running away and coming back, I’ve tapped in to a part of me that I didn’t know existed.

I’m helping people to pass laws. I’m educating society on common community changes. I’m helping to promote the best possible special education that a child deserves. I have a seat at the “proverbial” table where I get to engage with the stake holders and power brokers and have my say about what’s important to my family and my community. I help to get the word out to abolish stigmas using less hurtful words and labels and to see a person FIRST before their disability.

Most of all, I don’t wait for a flawed system to become “fixed.” I hit the ground running, I tap in to my disability network, and we help one another the best ways that we know how. My children are Allah’s creation and, therefore, I am eternally grateful to have them.

I have a story to share. And, only through our sharing will things get better.

I have HOPE.

Safiyyah Amina Muhammad is a disability rights advocate and social awareness organizer who holds a public office and works for state organization and county organizations that provide peer support for special needs parents. She works with the National Black Disability Coalition as well.

Safiyyah Amina is one of the panelists speaking at the Islamic Society of North America’s 52nd annual conference on Saturday, September 5. She will be speaking on a panel titled “Finding Our Voice: Sharing our Disability Experiences to Seek Empowerment and Affect Change” at 4:45 p.m. in Room 9-1 at the Donald E. Stephens Convention Center in Rosemont, Il.

Islamic Society of North America

ISNA

ISNA Disability Narratives

medicaid

parental advocacy

rights

Safiyyah Amina Muhammad

schools

special needs parenting

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