I’ve always been surprised about my parents being so open about our life. Society and culture teaches different is bad and should be hidden. Fear of discrimination and shame is why people hide their differences and try to conform to what they think is “ideal” or “normal”. This life I live, nothing about it has ever been normal, nor will it ever be. I always have been and always will be the voice my sister doesn’t have.
My sister, Mehreen is only 13 months younger than me; she’s my absolute best friend and she has Autism Spectrum Disorder. Our relationship is very different than most sisters, but we are closer than ever. One that is based off few words, yet filled with love. I know she is always listening if I need someone to rant to or someone to laugh with. I believe God has sent my sister to us, to bring our family closer together, to allow us to appreciate the small things in life and become more respectful to people around us.
“Fear of discrimination and shame is why people hide their differences and try to conform to what they think is “ideal” or “normal.”
When people see something strange or something they are not used to, the first thing they do is laugh or judge. Growing up in my family, I knew there is more than the eye can see. I learned to see the good in everyone; other people with disabilities inspire me. The rewarding feeling to get to help a person every day of my life makes everything worth it.
I would be lying if I said there were no hard times in my life. Living with someone who has a disability can be difficult and it affects every single aspect of daily life. It’s almost impossible to understand the challenges faced unless you live it day in and day out. There have always been restrictions that make me feel angry, such as the notion that my family doesn’t participate in “normal” things. We almost never attend any event or party as a whole family, one thing that hurts my heart much.
It sounds silly to most people. Maybe they don’t realize that there is nothing fun about attending an event where everyone is taking pictures with their families, enjoying fun experiences and making memories and you’re not. Having half the family missing is what we have to go through to prevent my sister from getting upset, ruining the event for others or simply because she does not want to go.
“It’s almost impossible to understand the challenges unless you live it day in and day out.”
Mehreen is often unable to express her feelings and needs which often cause her to become very upset. I often feel helpless. We must meticulously plan for every small event in our life, even if it’s as simple as going to the grocery store. In reality, nothing in the life of Autism goes as planned. Some places are just impossible to visit.
We never took my sister to the mosque. We had a few bad experiences with people being rude. The house of worship was never accommodating for her. Up until recently, people never knew those with special needs lived in our Muslim community. Since we choose not to hide my sister, we are always prepared for mean stares or comments that could come our way. It’s still a stab in the heart each time.
The fear of the future seems more difficult than life. There are many unknowns: what will my sister do when she finishes school? Will she be able to get a job? Who will take care of her when my parents reach their old age? I will always be there for her to integrate her into my life to make her happy. I am always careful letting people into my life. They must accept my sister and love her for who she is.
I have not met many other Muslims who have siblings with disabilities, although it’s safe to say they definitely exist, despite the community’s attempt to hide them. When I met the one or two that I know, I was ecstatic! Even though they were complete strangers, I felt like we had so much in common regarding our life. It was awesome to hear that other people go through similar things that I do. Nobody in the Muslim community has ever really talked about people with disabilities until Sheikh Omar Suleiman founded MUHSEN (Muslims Understanding and Helping Special Education Needs). This organization has reminded Muslim leaders and masjid boards of members of the community they are forgetting and to practice the prophetic tradition.
“I am always careful letting people into my life. They must accept my sister and love her for who she is.”
To my fellow special siblings, I know you’re out there. Don’t be silent, don’t hide your siblings and don’t hide your fears. You are not alone. We need you to come out and do the world a favor by teaching them how to be compassionate people and to care for people with disabilities. We need to break the stigmas. We need to support each other. Don’t be silent.
To people who don’t have a family member with a disability: Don’t be silent. Break the stigmas in the Muslim Community. Reach out to your neighbors and lend a hand. Stop being judgmental. Practice what the Prophet Muhammad (peace be upon him) has taught. Even a little action can make a difference in someone’s life. I now know why my parents have chosen to share my beautiful sister with the world; endless opportunities for reward. Don’t be silent.