The other day I started a series describing ways that tics (from Tourette Syndrome) can be misinterpreted by others. The first blog on this topic dealt with something I have personally experienced: tics being misinterpreted as signs of impatience or boredom. Today I am going to deal with a misconception that I don't deal with personally, but that I imagine is not uncommon for those with certain vocal tics: tourette syndrome being mistaken for a cold or another contagious illness. As coughing & throat clearing are two quite common vocal tics, it's not difficult for NT's to make the assumption that someone is sick with a contagious illness. This might seem like a benign misunderstanding to someone who has never dealt with this type of reaction; after all, a physical illness would seem to inspire more sympathy than tourette syndrome. This is not the case, however--it seems to be human nature to conclude that anything that resembles a contagious illness must be contagious and that anyone who appears sick has hostile intentions & is deliberately roaming the world, trying to infect the healthy. There is no doubt some kind of evolutionary advantage to reacting this way, but there is also no doubt that this reaction adds to the distress of the person with tourette.
I've been away from the blog (and website in general) for a bit as I've been focused on dealing with flare-ups of some of my chronic health\disability issues. This is something that I've been struggling to figure out how to live with it--having certain disabilities (for example, a chronic illness such as IBD (ulcerative colitis and\or Chron's) necessarily means having healthier times and not sicker times, so how does one maintain a long term project, such as a blog or website? Most writing advice (actually, all the writing advice I've ever come across) consists of truisms such as "write every day" and "you can write every day, you just have to make it a priority." I long for role models who live in a real world punctuated by medical crises!
I've added a new book review to the "books for adults & teens" section of this website. I admit that I am not qualified to comment on most of the advice offered in "Raising Resilient Children with Autism Spectrum Disorders," but I was impressed by the fact that this book not only reiterates advice offered by Temple Grandin, but also quotes Temple directly. It is always cheering to see so-called "experts" being flexible to listen to those of us successfully living with disabilities.
I had one of those moments yesterday that restores one's faith in humanity. A mother came up to the reference desk & asked if we had any books that she could use to explain autism to her first grade daughter. We have a choice of autism materials so I immediately said yes and then tried to pinpoint exactly what the mother was looking for, "Are you looking for a sibling or a classmate or. . ."
Mom's reply was as follows:
Oh, my daughter was doing her Valentines, and I said to her, "You don't have enough here. There are more kids on your class list than this." She said to me, "Oh, I forgot the autism kids," but I don't think she understands what she's saying.
I'm sure the other children in her daughter's class benefitted from this mom's intervention and I'm sure her daughter did as well. She also made my day! So many well-meaning adults feel awkward discussing disabilities--it was great to see a mom who is willing to both tackle a situation head on and to seek out the information she and her daughter need to address things in a sensitive, informed manner.
I'm going to avoid writing about certain aspects of the media attention focused on Derrick Coleman: the fact that "legally deaf" isn't really a thing and that deafness is very often not a disability. Instead, I'm going to focus on Coleman's reintroducing resiliency into the discourse about bullying.
Bullying tends to be a personal matter for adults who have been disabled since childhood because so many of us were bullied. There seems to be something about a disability that attracts bullies. I believe that it is good that bullying is being recognized as a serious problem, but I am growing increasingly concerned that the mainstream discussion is compounding the pain and frustration of children who are victims of bullying.
When I was going up there was far less discourse on bullying and much less acknowledgment of the seriousness of the issue, but what limited discussion did exist tended to stress resilience in the face of bullying. There may have been little attention paid to bullying in the mass media, but much of what did exist came in the form of celebrities, speaking about their youth during interviews. The rich and famous would speak about times they had been bullied during their youth, painting a portrait of bullies as pitiable creatures, living tiny, little lives while their former victims reaped fame and fortune. Fictional stories tended to stress victory of bullying as well, with most films and books on the topic ending in some type of triumph for the bullies' target(s).
These stories impacted bullied children in two important ways. One is that they inspired us to imagine our own future success, viewing being bullied as a temporary situation, one that we could expect to eventually overcome. Given the number of suicides currently being traced back to bullying, this is no small matter. Perhaps even more importantly, celebrity stories were a tool in avoiding internalizing the message that we deserved to be picked on. Victory over bullying means hanging onto a sense of one's inherent value. Back in the day, one never heard about successful bullies, but there were enough stories about stars who had "shown up" bullies with their success. It was often implied that they were bullied by those who were jealous of their raw talent and\or beauty, offering an alternative explanation to the idea that one was being bullied because of an innate inferiority. At the very least, they suggested that being bullied put one in "good company" and offered fodder for daydreams of future success.
There is no doubt that bullies sometimes win. I know sensitive, kind, talented people who have been so badly scarred by bullying that they do not share their gifts beyond a circle of people who are also disabled. While I appreciate the fact they my life is enriched by knowing these individuals, I am saddened by the loss of their gifts to the world at large. I am certain that there are others who feel so diminished by bullying that they share their gifts with no one. It is important that we honor the stories of these individuals still suffering the after effects of childhood bullying, but it is equally important that those of us who have triumphed over bullying share our own stories.
Sharing our stories can inspire and strengthen youth who are currently being bullied, as Derrick Coleman's story doubtless has done. Our stories can also help to shift the current discourse on bullying. The "just ignore" advice so frequently given to bullying targets when I was growing up only compounded our frustration. I am concerned that the current, relentless emphasis on how pervasive and overwhelming bullying is actually intensifies feelings of hopelessness in kids who are already oppressed by terrible situations. Telling kids to "just ignore" the bullies made a bad situation worse, but our current approach may be doing that also. I'd like to see those of us who triumphed over bullying look at our own lives and share strategies that can help ameliorate--or even prevent--bullying. Here I talk about the importance of drawing inspiration from successful adults willing to talk about their childhood experiences of being bullied. Peter Flom talks about a different source of strength, working to develop friendships, on his blog: "I am Learning Disabled." I'd love to hear about others' strategies for resiliency. Here's a link to Peter's: http://www.iamlearningdisabled.com/finding-strength-to-have-strength/
I've been struggling a lot with the book "Wonder." It's popular. It's a "New York Times" bestseller. There's a reserve list for it at the library where I work--unusual for a children's book. It's also respected: one of Booklist's Best Books of 2013. I find all of this frustrating, because the book perpetuates misconceptions about birth defects--and a general lack of understanding about living day to day with many disabilities--and the book's popularity (especially as a children's book) means these misconceptions are being perpetuated in at least one more generation. I went to a new immunologist this week and I am so excited because she understands the my cleft was not "just cosmetic" and that the surgery I had to repair it, while incredibly important, was not the end of things--that medical problems related to a cleft palate are lifelong. This is something that almost no MD's understand. She "got" something else that medical doctors also rarely understand--the fact that my multiple disabilities interact and its important to consider the whole picture and not look just at the parts that officially fall into one's area of expertise. These are very important points--without this understanding, it is very difficult to get correct medical care--and poor care not only fails to solve problems, it compounds them.
The content on this website mostly comes from my perspective as a youth services librarian with disabilities. The further I travel along life's road, the more entwined these two parts of my identity become. Librarian: I have an MLS from Rutgers University and have working in public libraries for nearly 20 years. The focus on my career has always been youth services. Disabled: I've been disabled more than twice as long as I've been a librarian. My experience started at birth when I was immediately diagnosed with cleft palate. Also present was a non-verbal learning disability (NLD) for short. This was not formally diagnosed until I was 19, leading to years of frustration. My Tourette Syndrome was not present at birth, but surely started young as I don't ever remember living without it. The Tourette was also not diagnosed until adulthood, further compounding my frustration. Coincidentally, I was also diagnosed with IBD (more commonly known as Chron's\Ulcerative Colitis) at the age of 19. That was another easy diagnosis--as with cleft palate, they look and they see it.