Did you hear the one about a mom of a special needs daughter listening to one of her favorite comedians making a tasteless joke about a special needs person? Well, this isn't the start of a joke, and I'm definitely not laughing. In fact, I have been trying to figure out what to do since the moment I heard Steve Harvey, in character as Sister Odell on his radio show, making jokes about a special needs individual. I heard him say things like:
Her half-witted little niece who is slow as molasses
Everyone wants a slow baby
She's over there blowin' bubbles
She's 32 years old with the mind of a 3-year-old
As an avid fan of his morning show, I decided to take a page out of Mr. Harvey's book and write him "A Strawberry Letter" just like they read on his show.
I have a daughter with special needs. I love my daughter so much, but life with a child with a rare genetic disorder (so rare that it doesn't have a familiar name) can be difficult at times. You may recall from biology class that a genes are the basic physical and functional unit of heredity and are made up of DNA that act as instructions to make molecules called proteins. Every person has two copies of each gene; one inherited from each parent and each cell normally contains 23 pairs of chromosomes, for a total of 46.
For my daughter, her genetic disorder (deletion) occurs on the 10th chromosome, specifically 10p15.3. It is so rare a genetic disorder that there are only about 20 known people with the same disorder.
To put it into context, if my daughter had almost any other disease, a doctor could tell me the likely cause, course, duration and probable outcome or prognosis (like how long she is likely to live). Unfortunately for my daughter, with her rare genetic disorder, doctors cannot tell me too much about her, but what they do know is that she has no chance of recovering. Her condition is life-long. We simply manage her health and any associated condition of her disorder. The bottom line is she will never be cured. Can you imagine my pain at not knowing what to expect, her prognosis or life expectancy because so few individuals have what she has?
Her disorder includes craniofacial dysmorphism (facial abnormality), hypotonia (low muscle tone) and brain anomalies for which has seizures. She has to sleep with a breathing machine. She has also shown problems with growth and development. After being told by specialists she may not walk or talk, she worked with speech and physical therapists and at around age 4, she began walking and talking. In a nutshell, her disorder affects all her body systems. Even with all of this, she is beautiful.
She has features of autism and delayed learning ability. In essence, she learns slowly and differently, for which she has been brutally teased by other kids. One time, a kid at school hit her because she forgot to flush the toilet. Kids have also called her horrible names like the "R" word. It's a terrible word and for this reason, we participate in the "Spread the Word to End the Word" campaign. We know firsthand the pain that individuals with cognitive disabilities feel by the use of the R word. Steve, there's absolutely nothing funny about that.
Her cognitive ability and her associated health issues complicate my daughter's quality of life. She has come a long way, but still needs help in gaining independence in daily activities. But this is her reality, our reality. One in which you so easily made fun of. It's not OK to make fun of someone's daily struggle.
Believe me, Mr. Harvey, with all that I go through with my daughter, I could use a good laugh most days. But not at the expense of my daughter and those individuals like her. Her life and struggles are not fodder for your jokes. This is Autism Awareness Month, and I'd like you to get to know about my daughter and individuals like her.
They are champions struggling each day to walk better or talk more. They work with specialists day in and day out to make improvements, even the smallest ones. They are challenging bullies each day who laugh at them and call them awful names. They are holding their head up high while facing gawkers who stare and point at them. They are helping to break down stereotypes of what special needs and differently-abled individuals are capable of doing. Some of them, like my daughter, are athletic and find enjoyment and pride by participating in group sports. My daughter loves softball and basketball and plays through such programs as The Challenger Program and Special Olympics. In fact, some of my daughter's friends will be in Los Angeles this summer for Special Olympics World Games. They are all of the above and more.
These individuals are in need of our support. It is important for respected people in your position to shine a positive light on their experiences, not make fun of their plight. Mr. Harvey, work harder and do better, because people with special needs are not a punch line for your jokes.
A Special Needs Mama