Facebook Notes: Everyday Ableism

Image of Mu, a Hispanic presenting biracial four-year-old male
in a blue hooded coat sitting in a special needs stroller Credit Kerima Cevik

When Mu was very young, we used to make these contrarian decisions on occasion just to fight the power. One of those decisions used to entail going out to family brunch on Sundays to places where people my color married to people Nuri’s color and producing offspring with our son's biracial identity and degree of disability were not welcome.
I sometimes don’t know what we were thinking, other than the fact that in this day and age, we should have a right to eat where ever we wanted.

So it was that we found ourselves at a particular location of Atlanta Bread Company on a Sunday for brunch, and Mu was about the age he was in the featured photo above. During these outings, the goal was never to stay longer than he could tolerate. If I saw the early signs that he was not going to take anymore we had a protocol, and that was Nuri paid the bill and packaged uneaten meals while I got him back in his wheels and he and I rolled out of the restaurant and into fresh air asap.

We usually gave him about 10 minutes before his tolerance was up. 15 minutes if the food came out quickly and there were no loud machines or blaring music. 

I settled him out of his special needs stroller and helped him prop comfortably in the booth next to me. He was sitting, standing, stimming, vocalizing happily and basically being autistic. We gave our order, Nuri asking for Mu’s food to be brought immediately and spoke quietly, being ready to grab for Mu quickly if he tried to lean over too far or otherwise engage in acrobatics. This was a carefully orchestrated dance of movement, stimming, and conversation, punctuated with occasional parental rescue lunges and replacing Mu in his seat or helping him eat his brunch as it came to our table.

While we were eating on this day, we were subjected of course to gaping stares, particularly from one stylishly dressed elderly white female in makeup that she wasn’t aware settled in the creases and lines of her face. She was eating with her husband and another couple directly forward and to the left of our booth. I deliberately ignored her until Mu had reached his tolerance limit. I quickly lifted him into his stroller and only then realized she was determined to block Mu’s stroller from exiting by pushing her chair in our path. 

“You know, our daughter has one of those,” she said to me. “Excuse me?” “How do you mean?” I answered. “One of those.” “Like your son.” “A (insert r-word) kid.” “Did you know there is a place called the Arc where you can leave him so you don’t bring him here?” “He’s better off there with his kind.” There was a collective intake of breath in the restaurant. You could hear a pin drop. 

I smiled at her, a smile our daughter tells me is terrifying, deliberately pushing Mu’s chair closer. He became more agitated and threw a sharp vocalization at her making her flinch.“I know the Arc very well.” “Do you want to know what they told me about my son?” I answered loudly enough for the whole restaurant to hear while retrieving his favorite stim toy from his backpack and handing it to him to calm him. 

“Sure.” she replied.
“The Arc said to take him out in his community, everywhere, all the time.”

I held my head up in righteous indignation and Nuri suddenly stood beside me looking down at her and said: “is everything alright here honey?” We both stared her down and red-faced, she was forced to move her chair forward. Several other diners, embarrassed, moved chairs and tables to allow me to wheel Mu out of there. Two people came up to us on our way out to apologize for the woman’s behavior. A waiter apologized and held the door open for us. Nuri waited for his credit card and joined us outside.

Once we were on the tree-lined walk home, Mu immediately calmed down. Nuri took over the job of pushing the stroller. It was a beautiful day for a leisurely stroll outside. After about five minutes we looked at one another and burst out laughing.

I leaned over and lightly ruffled Mu’s hair. “Well done, Mustafa,” I whispered to him. 

This isn’t an unusual event. It just ended well. It happens so frequently that sometimes I forget it isn’t right nor it is the way other families have to live.

We are fortunate enough to love one another and see the bad attitudes of others towards our marriage and our son as their problem rather than blame him or his neurology for their discomfort. He is a long way from the wiggly child he was at restaurants now. But his disability is apparent, and we still get the gaping stares, the blatant ableism, additional racist comments, and the attitude.

I don’t enjoy staring down ableist old white ladies who despise their own grandchildren.

But then again, no one is going to denigrate our son or her grandson for that matter. 

This is the job of being parents.  This is also my job as an activist. 

These are the people and the mentality we are trying to counter. It is a hell of a job, but somebody’s got to do it.

To all Autism families. It isn't their neurology's fault. The fault is in generations of people who weren't brought up to know that different doesn't mean undesirable or less. It just means different.

Onward, to battling the injustice in a world where our children do belong, to give them their rightful place in society.

Happy Birthday Nuri

I wrote this in 2014 just after my husband's birthday.  I'm sharing it again this year because I can't emphasize enough what he means to me and our children. I also think it is important to counter the accepted stereotypes about marriage and autism resurging in social media. Autism, even where an autistic family member has intense support needs, is not the cause of ending marriages. Either both parties are committed to their marriage vows or they aren't. Blaming disabled children for divorce is not only unacceptable, it makes that child a target for all the emotional baggage other family members want to scapegoat them with. If siblings aren't getting enough attention, they are not participating in including the autistic sibling in the family and that is on the parents. I'm not saying it is easy. It isn't. Trust me I know. What I'm saying is that if the entire family is united, it is more than possible. It is wonderful. Here is my essay in honor of my best friend, love, the father of my children. Peace.

Interesting fact about my husband. The name Nuri comes from the root "Nur" which means light. Yesterday was his birthday, and just as he was ending a late night of working Tuesday he was closing browser windows and I noticed his Chrome browser looked like this:

Image description: the word Google spelled in cake and cupcakes with candles on them against a white background. A small white pointer shaped like a tiny white hand is hovering over the word and under the hand is displayed the words "Happy Birthday Nuri!" in gray print on a white rectangular background bordered in gray.

Nuri holds his son in the NICU,
December 7, 2002

It was a perfect, subtle, and geeky way to start a day of remembrance for his light, and celebration of the gift he is to us. Of course most of you don't know Nuri so I will only say that I know very few fathers like him. When you choose to love someone, you rarely stop and say "now what kind of a father would he make?" You only feel intensely, and if you are like me, you sit in daily amazement of your luck. It certainly wasn't something I expected. If a fortune teller had said to me when I was young that I would marry anyone I would have laughed myself to tears. That was not really the plan. If I had been told that I would find someone so devoted to his spouse and children I would have shaken my head in serious doubt. That sort of thing is a bit of a relationship miracle. Relationships take hard work, and that is not helped along by life. To help you feel contextually what I mean, let me relate a real life example of two marriages.

I met two Turkish sisters, one two years older than the other, halfway around the world. These two pretty sisters had met two American military men in a nightclub and they each married those men. The younger one happily married an army sergeant and they raised two lovely daughters. The older sister married a dashing officer and they moved back to the U.S. She thought she was living a dream life with a fairy tale ending in Texas.  One day she and her husband were driving back from a trip when another vehicle T-boned theirs. She woke up two weeks later in a hospital room unable to move. Her husband had been released from the hospital a week earlier with minor injuries and was standing in her room. A team of doctors was discussing what kind of quality of life she would have. They told him one leg would be shorter than the other. She would require several more surgeries. She  would need to learn to walk again. They did not know what her brain function would be. Certainly, the internal damage combined with a shattered hip meant she could never bear children. She heard it all of course. She was in traction but awake. Her hearing was working perfectly. Her lead surgeon said that she would need her husband to support her through the next 2 years of physical and occupational therapy. They told him he could speak to her but only briefly. He walked to her bedside and told her he "couldn't handle this". Her dashing officer walked out of her room, the hospital, and her life. She was left to face two years of grueling recovery work on her own, in a foreign country, with no family around her.

First Father-Son road trip, Pentagon City,
February 2003

Life is like that. Things happen. It is not about what happens, it is whether the person you choose to walk through life with will be there and stand by you through those challenges. My dear friend, who I'll call Leila, fought through surgeries and PT and OT, she called her sister and her American brother in law who were by then stationed in Germany and told them what happened, and that she was alone. They tried to help as much as they could. She learned to use her rebuilt, shorter leg, a walker, her metal hip. She went back to school, got a GED, and didn't stop until she had a Masters degree. She studied until she became a naturalized U.S. citizen. She met a man, an American who was an African American Ph.D. and both faculty at a university and consultant for the U.N. When I last saw her she was incredibly happy and they were moving to London. He had never met her before her life changed. He knew her as she was and loved her as she was. She told me she finally realized that her first husband had never accepted her. She just hadn't realized who she really was until she acquired a disabled label.

Father and son, Mu is about age 3 here

So now back to the light, and my Nuri, and his birthday. When I met him, I was losing my sight again but didn't know why. I later learned there was what appeared to be a tumor under my forebrain. I was in Panama at the time with my birth father. What Nuri said to me was to come home, meaning come back to Turkey. He would find the best damn neurosurgeon in the world but I wasn't going to give up we were in this together. So I stood there, in my quarters at my birth father's estate remembering Leila and the story of her life. I went back to Turkey. Nuri insisted on keeping me linked to life. We married quietly and beautifully against my protestations that this was a brain tumor, and I would be a burden on him in the end. He said we would live a lovely life in Istanbul and laugh and I would wake up hearing the sea every day. He built a database of the information that I needed to access in order to manage daily work and home tasks and added a text to speech widget on my computer. We lived in Istanbul and were very happy until September 11, 2001.

Nuri and Musti enter the UMD pool
for a swim class

On Mu's diagnosis day Nuri hugged our son. He was overwhelmed. Time marched on. There was no discussion of  "not handling it". There was only "how can we work together for Mu's future?" "Our son, "Nuri said, "should have a future. He should be happy." He watched his son, whose middle name is also light, make progress they said was impossible and he slowly moved us into life again.

 Yesterday, Mu was doing an occupy protest in our bedroom in order to avoid bedtime. He was on his back on our carpet absently blowing notes on his harmonica. Nuri saw him as he was walking past our room to his home office.

"Hey son!" he called, smiling.
"Hey dude!" Mustafa answered.
Shock. We were in shock.
We are never sure when he has these moments of verbal speech that we aren't hearing things. Nuri ran into our room. Mu smiled and gestured that this might be a good time for his father to tickle him.

What a gift he chose for his father's birthday. That young man knows when and how to blow us away.

Sometimes I feel the joy a person feels when the sun is on their face and it shines so bright and warmly tears stream down.

Light upon light, glowing infinitely.

Happy Birthday, Nuri, my heart. How lucky am I?

Nuri years ago, playing guitar at his old home office