I was thirteen when my younger brother Umar entered the world, struggling with the umbilical cord wrapped around his neck. As the Noble Quran tells us, “with struggle comes ease,” (94:5). After that initial scare, the delivery went well and he seemed to be in good health. While holding my beautiful baby brother, I marveled over his lengthy limbs and fingers, speculating with my sisters whether he would be an artist, an athlete, or both. As the first boy after four girls, and with there being at least a decade age gap, we pondered over what we might share with him and all the milestones we would witness.
A year and a half later, when he received his diagnosis of polymicrogyria, which is characterized by stable neurological deficits (which, in his case, include cerebral palsy), the doctor said he would not be able to walk or talk. With one medical diagnosis, our plans crumbled and anxieties flooded in–what might life be like for Umar? Would he ever be able to live a joyous and fulfilling one? To keep from drowning in fear and uncertainty, I put my trust in our Lord who is Al-Alim (The All-Knowing) and Al-Hadi (The Guide). Taking the pressure off myself to have all of the answers was freeing. We would just have to take things one day at a time and not let our worries for the future eclipse our appreciation of having Umar in our lives. “For the Believers … there is no fear upon them, nor shall they grieve,” (Noble Quran 2:62).
Now, Umar is 17, and Alhamdulillah (praise God), it is a blessing to smile and laugh with him every evening after our long day of work and school. He usually comes home with positive reports, but occasionally displays his teenage sass using his communication device to say, “I don’t care,” a sentiment not uncommon among my own senior high-school students.
I recently walked with Umar as he drove in his power chair to his homecoming dance. It was heart-warming to see how many peers and staff members knew and greeted him. It was a house accessible for Umar’s new power chair and a school with a strong special education program that had brought us to this neighborhood in the first place, and it turned out to be a blessing for the whole family–one that we would never have found if not for Umar.
He has also led us to be part of a great mosque community and volunteer for MUHSEN (Muslims Understanding and Helping Special Education Needs), a non-profit organization that supports Muslims with special needs providing accommodations for Islamic worship and learning and promoting awareness and acceptance in the community.
Compassion and sensitivity for people with special needs isn’t always easy to inculcate in society, however. Throughout the years, countless microaggressions towards Umar and my family made me fester with rage and ask myself: What is society doing to be more inclusive? And particularly, what are Muslims doing? If people have heard time and again the Prophet’s (peace be upon him) teaching that the best of men and women are those with good character, why are people so inconsiderate towards people with special needs?
Through MUHSEN, I was able to see that people who cared did exist and that I could be a part of the change that I desperately wanted to see. In addition to MUHSEN, I also work with SEED (Seeking Educational Equity and Diversity) where we strive for equity within our diverse world (which includes combating ableism and embracing and including people with special needs). Taking part in MUHSEN’s and SEED’s mission has been a powerful, healing and rewarding experience. However, the journey is never complete and life has shown me that there will always be struggles.
In May of 2017, we were at the Special Olympics Games at the College of DuPage where Umar was competing. I tell my sister Maheen that I was going to the restroom and she prompted me to keep my eyes open for a place where we might later change Umar. Usually, finding a place is a struggle since most places have a wheelchair accessible stall but don’t consider that some people need to lie down and be changed. Those Koala bear changing tables are designed for infants, and only work up until a certain age, not considering older children, teenagers, and adults with disabilities. So as I head back, I am super excited to report that there is a shower stall and an accompanying bench with a curtain that will work.
Later on, Umar had competed and we needed to change him quickly before the bus arrived, so we headed to the bathroom. Eager to get to the changing bench but not wanting to roll over any toes with his power chair, I announce, “Excuse me, we need to get through” to the people waiting by the door. One lady says, “You won’t be able to, there isn’t enough room”. I reassure her, “There is plenty of room; I just need for people to watch their feet”. Once we’re in, she says, “There’s no handicap bathroom”. Later, it occurs to me that there was one, which in hindsight makes it even more obnoxious that she said there wasn’t.
I say, “It’s ok, I don’t need a wheelchair accessible bathroom; we already know what to use”. Then, she says, “You know, it’s really inappropriate for him to be in that bathroom ‘cause it’s a girls bathroom.” I. Can. Not. Even. This has happened to me before where I find that not only is the world not designed to accommodate my brother’s needs, but then, to make matters worse, there are people that create further barriers and obstacles.
As an educator and diversity facilitator, I usually seize teachable moments, but at that moment, my priority was my brother’s needs. Every person deserves to be clean and comfortable and I was not going to give this lady power by disrupting and delaying our plans to change Umar.
Fortunately, the lady behind her exclaimed, “Are you kidding me right now?” The first lady repeated her initial statement and said, “He can’t be in here” to which the other lady said, “If the people taking care of him are women, where do you expect him to go…?” I was appreciative that someone spoke up because I did not have time to address that lady. Maheen and I hurried forward to change Umar while the two ladies exchanged words.
This moment highlighted a couple of things for me:
1. Humanity is not at a loss; good people exist.
In my 17 years of being Umar’s sister, I have never heard of anyone (aside from us immediate family members) intervene and speak up against a rude comment or behavior towards Umar. Yet, here was this White woman, disturbed enough by the other White woman’s remarks to address her. My dear brothers and sisters, if we witness any sort of oppression, even if it is a slight micro aggression, we should address it. Otherwise, the harm of those words will be a witness against upon the Day of Reckoning.
- With struggle comes ease.
God really blessed us in that moment when that sister spoke up on our behalf. This allowed us to focus on Umar and get him away from that woman’s rude comments. There will always be people in the world that try to tear others down, but there are also people willing to build others up. The initial rude lady’s comments were infuriating, but I have decided to be patient with people like that and correct them when I can, and remind myself that we must not be humiliated and allow ourselves to be defined by people like her.
Alhamdulillah, Umar just turned 17. His voice is starting to change, his body is changing and although he still has his boyish charm and good looks, masha’Allah, he is starting to resemble a young man. People support people with special needs when they are cute adorable kids that appear innocent and cause no harm. What about when they are adults? We are starting to have conversations in our masajid (houses of worship) and increasing awareness about the responsibilities that we have towards our brothers and sisters with special needs, but often I hear the khateebs (speakers/preachers) talk about kids with disabilities. We need to also consider adults. We need to find love and compassion in our hearts for those that have global developmental delays, physical impairments, speech impairments, mental disorders, and intellectual disabilities.
For my family, our main struggles have always been with the constraints and burdens people/society place on us due to ableism. But through education and awareness, we can hopefully make things easier for people with special needs and their families.
Here’s what you can do:
1. Ask questions.
Do the work of finding out the answers yourself so that you can avoid putting the person with special needs and/or their family members in a position where you say something rude. There are plenty of articles and resources on Dos and Don’ts, including appropriate language to use (known as people-first language). There are also great videos (such as the late Stella Young’s TED talk).
2. If, after making an effort to find an answer, ask people with disabilities and/or their families directly.
Sometimes answering questions might be uncomfortable, but for me, I would much rather experience awkwardness if it means that someone can learn something valuable.
3. Proximity is everything!
This idea was reinforced for me by Bryan Stevenson. If we get to know people with disabilities and their family members, then we can better understand them. Through proximity we can acknowledge the similarities and differences and build empathy. This empathy will, insha’Allah, lead to being able to be an advocate and ally to others.
4. No need for pity or exceptionalism.
Majority of people ignore us. For those that don’t, they usually hit up these two extremes, pity or exceptionalism. We don’t need your pity as caregivers and we also don’t need for you to think we’re exceptional for taking care of the important people in our lives. I love my brother and he is a source of light in our lives, not darkness. He doesn’t need your pity either because his body is good to him, he is able to do many things, and he is happy. When you pity people or make them exceptional, it is hurtful, demeaning, suffocating and unnecessary. Please don’t project your feelings and burden us with them.
5. Do your part.
Aside from doing good for goodness’ sake and being upstanding in behavior for the sake of morality, it just makes sense. Statistically speaking, you will eventually encounter (and hopefully love) someone with a disability. This is the largest minority group and one that people can be born into or be a part of later on in life. Your child, spouse, niece/nephew, grandchild, cousin, neighbor, co-worker, etc may be born with or develop a disability. You, yourself may later have a disability. Isn’t it wise for us to educate ourselves and support each other now?
There is much to do in our society to make places more accessible and just for people with special needs. My sister, Annie Bajie, called all of the taxi-cab companies in our area and none of them had wheelchair-accessible vehicles that would take us from our house to our nearby mosque. One even told her that it is because there isn’t demand. Annie Bajie really wanted for Umar to be able to use his power-chair during the Autism Walk so she let him sleep in and ended up walking five miles with the chair from our house to the mosque where the bus was going to pick us up to take us to the Autism walk downtown. She walked with the chair because sitting in it seemed unsafe since the roads were not paved; there was no curb and she thought cars might hit her.
After we did the walk, the people from our group rallied and talked to the bus driver to ask if he could drop them straight home so that Annie Bajie didn’t have to walk. Some even asserted that in the future, they could help her but none shared their number with her. Talk is cheap, people; follow through on your assistance beyond the initial “hurrah!” of the moment when people are coming together. God likes it when we assist when there is no one to witness our assistance as well. Check in with your city/suburb and see what ordinances they have to support people with special needs and make the city/suburb accessible for them.
One of the resources that MUHSEN offers is support groups. Annie Bajie told me that a mom came to support group talking about how hard it has been for her. A week later, her child died. Before MUHSEN, we didn’t know of any support groups. The question that Annie Bajie shared with me was how long we have as a society/community failed her? Finally, when we had a group, that mother was able to attend one session before her child passed away. That weighs heavily on my soul, but I am reminded that to Allah (God) SWT we belong and to Him we return. But before people return, can we make the world a more accessible and equitable place for them? And before we ourselves return, can we make moves to do good with sincerest intention, compassion and with a sense of urgency? Insha’Allah, I hope we can try.
