By Judi Markowitz / Huntington Woods, Mich.
Having a disabled child has brought me face-to-face with every imaginable type of social behavior. Over the years, though, I have come to realize that there are basically just four groups of people, all of whom reveal their true natures when encountering an individual with special needs. I call them the gawkers, the talkers, the smilers, and the do-gooders. The people who fall into these categories are often looking for ways to connect with my daughter, Lindsay, or myself. At times, sadly, their attempts are an utter failure. However, there are also instances when I am amazed at the warmth and grace other people display when approaching Lindsay.
The first group, the gawkers, look at your child intently as you walk by. Some people have the audacity to return for a second round. Do they think I don’t notice this unwelcome intrusion? Young children can be some of the worst offenders–they are innocent and usually don’t know they are doing anything wrong. We have been in situations where groups of children have literally come within inches of us while we were shopping, and their expressions were like those of zombies.
I usually bring them back to the land of the living by saying, “This is Lindsay, what’s your name?” This question breaks the ice and then conversations ensue about Lindsay’s condition. They are generally too young to discuss Marshall-Smith syndrome, so I keep it simple. But the most perplexing moment usually comes when inquiring minds want to know Lindsay’s age. When I respond, invariably there is a wave of confusion that crosses their faces. After all, Lindsay is 43, and the size of a 10-year-old.
When Lindsay’s three younger brothers were growing up, and a particularly annoying individual would stare at her, I had a mantra that I repeated to them constantly. I would comment that people need an education concerning those with a disability, and their own attitudes and actions with their sister will shine a light. Throughout the years, they have done a wonderful job with this information, and I have always been proud of the love and devotion they share with Lindsay. But I must admit, there were times when my encouragement went out the window and they wanted to slug Lindsay’s offenders. Fortunately, this never happened, but it was a definite impulse on their parts.
The talkers play varying roles. Occasionally, a child comes along who immediately connects with Lindsay. They might wave, approach Lindsay with smiles, not fear or wonder, and just simply talk to her as if they have known her for years. I am always awestruck by these children. They have an innate sense of what is appropriate and good. They are special in their own right, and I am invigorated by their kindness.
Other talkers might ask me Lindsay’s name and comment on her beautiful black hair or lovely smile. Some, in this group, will attempt to talk directly to Lindsay, and I intervene and ask Lindsay to say hello (with a wave) or shake her head yes or no to their questions. I explain that Lindsay is nonverbal. Depending upon Lindsay’s mood, she may respond appropriately, or she might ignore them altogether. I am sure Lindsay is thinking, “Not this again! Who wants to be bothered?”
Religious conversations are a frequent occurrence. I believe that most of these people are well-intentioned; the standard line those who have a disabled child receive is, “God chose you because you are capable. You are special!” I have asked myself on numerous occasions, “Do they have a direct line to The Almighty?” Lindsay was my first child, and at the age of 27, I didn’t have a clue about motherhood, let alone raising a child with special needs. Oh yes, I read all the right books at the time (Dr. Spock was in the limelight back then), but it was just information on a page. I was not special.
Truly offensive talkers strike a nerve. I have overheard parents say to their children, “Don’t look at her–move away.” Do they think their children are going to catch Marshall-Smith syndrome? Instead of embracing a teachable moment, they opt out of the situation and instill trepidation in their children. I have often thought about telling these people to eff off, but I refrain.
The smilers are an interesting group. I like them because they are genuine and try their best, but there are subcategories. Some people do not have words to explain their feelings and are being cordial when flashing a warm smile at us. There are also individuals who are nervous and don’t have the appropriate tools to react to a disabled individual–a smile will ease their minds. And lastly, there are smilers who give you a quick nod as if to say, “I feel for you.” Their expression, their eyes give them away.
Sometimes I wonder why do people feel they have to react to Lindsay at all, especially when we are walking, or I am pushing her wheelchair through the mall. Sometimes I wish these folks would just leave us alone, and react like they would with any other individual who does not have a disability.
The award winners of kindness are the do-gooders, the considerate people who treat us with deference and respect. These individuals are confident enough to approach Lindsay, acknowledge her, see her as a valuable human being, and talk to her with the utmost regard. These are the people who can elicit a response from Lindsay like no others. She is astute at sensing a connection and will react favorably.
When the mask mandate was lifted in Michigan last year, Lindsay and I were finally able to visit her favorite haunts once again. I was overwhelmed when a sales representative approached us and leaned over to talk to Lindsay. She welcomed her back to the store and said that she missed seeing both of us. She then commented that she enjoyed watching Lindsay select her favorite clothing. Lindsay’s decisions come in the form of placing a hand on the merchandise that is held in front of her. Lindsay looked up at this kind lady and simply smiled.
There are numerous instances when the do-gooders will approach me in a parking lot. I am not cognizant of the fact that people are watching me–but they are. When lifting Lindsay into or out of the car, I have been asked on many occasions if I need help. The same holds true when I am grocery shopping with Lindsay. People will inquire if I want assistance pushing the cart to my car. I have my standard lines which I have repeated for years. I always thank them for the offer, and then add in that I am simply fine maneuvering with my daughter. I respond that I “have my routine down pat–my muscles know just what to do.”
I am always amazed at the polite opening and holding of doors for us to walk through. Even when there are automatic doors, people will extend themselves to make life a bit easier. But when there are no offers, I use my tush (butt) to hold a door open for Lindsay’s chair to ease through. I have managed to navigate most situations with little difficulty.
A superstar in the do-gooder category appeared in a Florida restaurant last winter. Our family was seated at a booth and the table was clearly too high for Lindsay. The restaurant was packed, and this was the only available table. Given this situation, we asked the server if there were any chair cushions in the restaurant. She shook her head no and then proceeded to leave as we contemplated our dinner selections. However, observing Lindsay’s short stature, the server went into creative mode. She returned with the large menus swaddled in Saran Wrap, a makeshift cushion for Lindsay to eat comfortably. These acts of kindness overwhelm me, and I am reminded that the human spirit is alive and well.
I take immense pride in the fact that I have maintained my composure with rude and inconsiderate individuals. But after 43 years of explanations, strange and unappreciated comments, and constant stares, a lady in the ice-cream section of the market, tipped my hand to the dark side three years ago. Deep down, I always knew that one day, someone would be the recipient of my pent-up wrath. On a hot and humid day in August 2019, I had a close encounter of the horrible kind.
Lindsay and I were grocery shopping at a local market, and we walked over to her favorite section of ice-cream delights. A woman was standing by the freezer doors, staring intently at the selection. It was clear she was contemplating her choices, so I gave her space to decide. I began to make small talk with her and weighed in about our favorites. At this juncture in the conversation, she turned to look at me and Lindsay. Suddenly, she put her hand over her mouth. Then she proceeded to shoo me away with her other hand. I was totally befuddled.
What was this lady doing? I wondered if she was having a medical issue--did she want me to summon for help? She immediately backed away, repositioned her hand on her mouth so she could talk to me. I just wanted to open the freezer doors and take out a carton of Mackinac Island Fudge ice cream.
The woman asked if Lindsay was my daughter and proceeded to tell me that she worked with special needs clients who had multiple health issues. She inquired about Lindsay’s condition and I was in mid-sentence when the insanity began. The woman took a step back and, once again, put her hand over her mouth. while shouting for us to move away.
I was stunned, unable to move. I steeled myself against this absurd woman–our attacker. She now motioned for us to move away. She yelled that she could not be by us–we were evil, and she could not be tainted by us. She insisted loudly that Lindsay was the direct result of my wrongful deeds in life. Then God came into the tirade. The woman began to shout and walk closer to Lindsay while yelling that I was hated by Him. And this woman purported to work in special education! I think not. I was in shock and moved quickly to escape her wrath. I wondered what Lindsay was thinking.
I walked with Lindsay around the frozen food aisles for what seemed like hours, trying to process the scene. I could feel the rage rising in me like a volcano about to erupt. And as I turned a corner, I spotted the abusive woman in line, at the checkout. It was my turn to confront her, and every word had weight. I am generally a levelheaded individual, but this craziness and her attack got the best of me.
I started to tell her, in a somewhat calm voice at first, that Lindsay and I did not appreciate her unwarranted opinions. I told her that she had no right to speak so hatefully. And then I started to raise my voice and yell about her intrusive behavior and her ludicrous accusations. I lost it. I cannot even remember all the things I said to her out of anger. I moved away as she continued with a diatribe of insults, shouting above the patrons as Lindsay and I exited the store. I was completely rattled, to say the least. Obviously, no groceries were purchased on that day.
My husband, Jeffrey, inherited our crew of five when we were married nearly 25 years ago–four children, one with special needs. He did not have children and had to adapt to a full house. Adjusting to those inquiring eyes from strangers gazing his way was an entirely new chapter. But Jeffrey said it eloquently when discussing the issue. He said, “We stand tall and walk proud because we have love and a purpose to help someone enjoy their life.”
In our small city, which encompasses one square mile, Lindsay is treated like a celebrity. People are always stopping to say hello. They give a shout out when we are sitting on the porch, walking to the car, or just hanging out in front of the house. Lindsay is recognized by more people than I can count and, if she could write, she would be signing autographs. I would like to think that Huntington Woods, Mich. is a microcosm of the world, but sadly sometimes it is not.
Judi Markowitz is a retired high school English teacher of 34 years. She primarily taught 12th grade and had the pleasure of her three sons gracing her classes. In addition, she taught debate, forensics, and Detroit film. Judi has four adult children and seven wonderful grandchildren. She is married to Jeffrey Markowitz, whom she met in high school.
Judi grew up in Oak Park, Mich. which had a stellar school district, with excellent teachers. The city provided activities for all–and there were even sidewalks. Judi moved to Huntington Woods as an adult, which is a half mile from her childhood home. She wanted the same experience for her children as she had growing up, and Huntington Woods provided that. The View from Four Foot Two is Judi’s first book.