If you haven’t seen this yet, it perfectly shows what African-Americans face in our country. It is funny, but it is meant to connect with you on that level. Sometimes humor is the best answer to help people understand what is really going on. Thank you to Peace House for putting this up!
On Saturday May 16th, the Tourette Syndrome Association will be holding it’s first Tourette Syndrome Awareness Walk of Delaware. The location is Glasgow Regional Park in Newark, Delaware. You can either participate as an individual, join a team, or create a team.
Sponsored by the Tourette Syndrome Association, this walk will help spread awareness and understanding of the disability that is widely considered to be one of the most often misunderstood disabilities in the world. Please come out and help spread awareness! To register, please go to the following website:
As a father of a son with Tourette Syndrome, I can say this disability is extremely challenging at times. It can manifest itself in many different ways, and is usually accompanied by several co-morbidities which can include ADHD, OCD, ODD, anxiety, depression and others. While nobody knows the exact cause of Tourette’s, whether it is genetic or environmental, those involved know there needs to be more public awareness and tolerance of this disability.
This is going to be one of the hardest articles I’ve ever written. The reason for this is because it is deeply personal. I write about bullying and discrimination often on this blog, and I understand it all too well. I see it everyday, in all walks of life.
“People fear what they don’t understand and hate what they can’t conquer.” Andrew Smith
Everyone in this world has bullied or been bullied at some point in their lives. Any time you exert will and force on someone to get a desired outcome, this could be defined as bullying. I am guilty of it. In my quest to have the perfect IEP for my son, I have expected knowledge and wisdom of my son’s disabilities greater than my own. This has been my life for the past 9 1/2 months. I didn’t even realize I was doing it until someone said these simple words: “You’ve had two years to understand your son’s Tourette Syndrome. His teachers have had eight weeks. And I’m sure you don’t fully understand it at times.” In a very odd way, my attempts at advocacy for my son in school can be viewed as a type of bullying. I admit I have been forceful in my attempt to do the best for my son, and at times the lines may have blurred between right and wrong ways to go about that.
“A lot of people are afraid to tell the truth, to say no. That’s where toughness comes into play. Toughness is not being a bully. It’s having backbone.” Robert Kiyosaki
Those words affected me in a huge way. My son’s teachers are with him seven hours a day. When I say teachers, I mean the entire school staff, whether they are certified or not. These are people who have been placed in an educational environment to help children succeed. They have hundreds of decisions they need to make on a daily basis. We expect them to make the right choices constantly. But they can and do make wrong ones. They are only human. Unfortunately, teachers are put in impossible situations all the time with disabled students. When I hear about my son calling out in class, or being disruptive, I sometimes wonder what would happen if a non-disabled student did the same thing. Chances are, with my son’s IEP, he would receive a gentle warning followed by a positive reinforcement statement. For a student without disabilities, the reaction may be different. Is this fair to this type of student?
“I know the world isn’t fair, but why isn’t it ever unfair in my favor?” Bill Watterson
This makes me question humanity itself. We will give one type of treatment to a group of people because we are required to, but not another. Some teachers will utilize the techniques they see in an IEP with the entire class. But for those who don’t, I can see how some students and parents could see this as a type of favoritism or preferential treatment. I think, in an odd way, this creates a bizarre type of resentment against students with disabilities. Students certainly pick up on it. I can see the conversation already: “Johnny threw a pencil and he was talked to and nothing else happened. When I did it, I had to go to the principal’s office.” For this student, something complex happens. He sees Johnny doing things and gets away with it, but for others they get in trouble. Students, especially those in elementary and middle school, are shaped by those around them. They expect everyone to get the same treatment.
“Friendship is born at that moment when one man says to another: “What! You too? I thought that no one but myself…” C.S. Lewis, The Four Loves
Do I think that student is going to reach out a hand of friendship to a disabled student? Sadly, probably not. The opposite usually happens, and this is when teasing or bullying comes into play. It can be a quiet, covert type of bullying. What happens next, which has happened time and time again with my son, is the disabled student’s reaction being far greater than the original sin. It’s like a snowball sliding down a hill, getting bigger and bigger every inch it moves. Soon, what was once a very small thing becomes so enormous it can’t be ignored. These things could be prevented, but it would take a very educated and compassionate person to stop it.
“Understanding is the first step to acceptance, and only with acceptance can there be recovery.” J.K. Rowling, Harry Potter and the Goblet of Fire.
If the non-disabled student goes home and tells his parents about this, the parent may call the school. Due to privacy laws the school can’t just say “That kid is on an IEP due to his disability.” This puts the school in a very awkward position. This can result in issues where the non-disabled child is pulled out of the school, and perhaps sent to a charter school or a private school. Or the charter school just can’t handle issues with disabled children, and the student is “counseled out”. These scenarios play out every day in our country and many of us don’t see the forest through the trees.
“Being ignorant is not so much a shame, as being unwilling to learn.” Benjamin Franklin
Unfortunately, outside of the school environment, these rules don’t apply. If a disabled child has an issue with another child in the neighborhood, a parent may tell the other parent about their child’s disability. At this point, the parent makes a choice: Do I let my child hang out with another child with this disability knowing issues can creep up more often? My hope would be yes, because it teaches our youth about tolerance and understanding. But the reality is a different landscape. I’ve seen it with my own son, where he is completely cut off from playing with certain children. Far too many people see disabilities as a type of mental illness, and when they hear the word medication, it raises this type of belief to high levels.
“I have learned that the biggest disability any of us may ever face is our own attitudes.” Jeffrey K. Walton
Advocacy is the art of informing another about an issue in a desired attempt to achieve resolution. In so many situations with my son, we have attempted to advocate first before issues could arise. But it is my fear this creates certain labels about him in others minds. When issues happen, the first thing this person may think is “They told me he has issues, well I’m not going to let my own kid be a part of that.” I have seen this time and time again, and it doesn’t matter which child has created the issue. It becomes the simple fact that problems are there, and instead of the adults getting together to resolve it, it becomes a blame game. It results in isolation for my son. The worst part is when he does see these kids again and more issues arise. Then it becomes something bigger than the sum of its parts. This is when parents who may have once been friends, turn on each other. The rational part of the mind is replaced by fear and misunderstanding. Anger takes hold, and that’s when things can get ugly, and what started out as a small problem can result in fences that can never be repaired.
“Anger is an acid that can do more harm to the vessel in which it is stored than to do anything on which it is poured.” Mark Twain
I read the blog Teachezwell often, because this is a special education teacher who is at the top of her game. She gets the students she is helping. She understands how so many of those issues are beyond their capability of controlling. She is not only a teacher, but for these students, their primary advocate at school. I wish I could clone her and place her everywhere in life. But I can’t, and I have to deal with this discrimination my son experiences almost on a daily basis. I see it in stores, or at a park, or anywhere the public is present and they see my son acting out or not listening to me. I understand him and what his limits and capabilities are. I know many of the triggers that cause him to do particular things. But how can I expect others too? Children don’t get an IEP outside of school, but I really wish they could. This is impossible. As long as there is fear and misunderstanding about things that aren’t viewed as “normal”, discrimination will exist.
“Not everything that is faced can be changed, but nothing can be changed until it is faced.” James Baldwin
Let’s face it, the vast majority of people who don’t have disability issues in their everyday lives do not attempt to reach out and educate themselves on it. I don’t blame them. It’s not like I research the effect of global warming on crops in Nebraska because it isn’t a part of my world. But to farmers in Nebraska, they don’t have a choice. If I were to meet one of these farmers, he may try to educate me on the dangers his crops are facing, but I would most likely walk away not absorbing what he said. It’s not because I’m selfish or uncaring, it’s because it doesn’t impact me the same way it does them. This is true of children with disabilities when parents advocate for them to the “outside” world. Adrenaline kicks in during problems, and the basic human tenet of “fight or flight” invariably kicks in.
“Nothing in life is to be feared, it is only to be understood. Now is the time to understand more, so that we may fear less.” Marie Curie
Is there any fix to these problems? Not an easy one. It would take a willingness of people to learn and find ways to resolve issues and not escalate them. It sounds very bleak. My heart reaches out to these children who feel cut off from the world and are alone so many times in their lives. They want to feel normal. They want someone to reach out to them and say simple words like “I understand,” or “I know what you are going through.” Loneliness and despair are the biggest enemies to these children. It’s where their thoughts start to live, and a deep and lasting sadness invades the light of their souls.
“There are wounds that never show on the body that are deeper and more hurtful than anything that bleeds.” Laurell K. Hamilton, Mistral’s Kiss
Inclusion is a good thing. It puts disabled children on the same level playing field with their peers. But it can also have some nasty side effects, the biggest being seclusion in an inclusive environment. I know my audience for this article is going to be those who are in this world in one shape or another. But I would encourage anyone reading this to pass it on. All too often, people don’t know what an issue is unless they see it. Please share this with those outside of the disability world. Unless we educate those who don’t have a vested interest, we can’t expect them to care as much as we do. It’s sad, but it’s reality. Whether a child has ADHD, Autism, Tourette Syndrome, or is blind or deaf, humanity doesn’t view these issues the same way as those who are knee-deep into them. But the best we can do is try, and try again.
“Love and compassion are necessities, not luxuries. Without them humanity cannot survive.” Dalai Lama
To read the very awesome Teachezwell blog, please go to http://teachezwell.me/