Your shades are drawn. You’re sitting on your bed and you have tears in your eyes - the most awful geyser of tears that have a mind of their own. You’re listening to sad music on repeat. Maybe you feel alone. Or lost. Or unsure of yourself. Or maybe you have a void to fill that used to be taken up by a loved one that is no longer around. In any case, I wouldn’t wish this feeling upon my worst enemy. But it’s bound to happen at some point or another, to every single person. It is truly beautiful, to feel so deeply. Remind yourself of that. Emotions themselves are absolutely gorgeous. And these are the moments- these moments of weakness- know that your differences will show through in stunning colors, and you will be stronger. I promise you that.
It has been said before that “God never slams the door in your face without opening a box of Girl Scout Cookies” (or however the old adage goes). There must be some good that comes out of fear and rejection, loneliness, and vanquishment. Although these things take time, perhaps it may feel like a lifetime, these obstacles are your ammunition. They are cans of gasoline to fuel you- to strengthen you. They are a reminder that you must love yourself, and the way you are different from everyone else. Allow yourself to exist. Allow yourself to feel the deepest emotions, and to love with all of your heart. Never hold anything back. Life’s about passion, and allowing yourself to love and to be loved with all of your heart. This all leads to growth, on an intellectual level. Personal growth is inevitable, and a remarkable way to be in touch with your emotions, desires, fears, and ideas. How lovely it is, to mold ourselves into the person we will be in the future?
So when you are having one of those days, don’t feel encouraged to have a “good day” or a “wonderful day”. Just have a “day”. Go out there and exist. Find something that makes you feel alive. Crave those moments where you feel unique. And run with them. At last, remember that difficult times do not define people, but they change people; they encourage people to evolve- in a way where they can love themselves, and learn more about themselves. Differences are beautiful. Dare to be different. I vow to always view differences as beautiful- and I encourage you to as well.
Kiva B.
Be different. Be strong. Be You.
Many times I’ve wondered about how different my life would be if I didn’t have disabilities, if maybe I was in my mom’s womb at the same time as my brothers. They don’t have disabilities. Maybe I wouldn’t. But that’s not how it turned out.
And I think about how hard my life has been, how different I feel from my peers, how much anxiety I feel because I am different. I realize that some people don’t accept others with differences, and that’s painful.
But I am different, and I do love myself. I do love my life, and I try every day to conquer those feelings of anxiety and difference so that my life can be happier, and more productive, and more beautiful. Because I know that this adversity makes me stronger. I am strong. I have to be strong. I have to believe in myself. I have to speak up for myself. I need to let the world know that every person, every living creature, deserves a chance to fit in, to be appreciated, to be loved, to be successful, to make a difference, to carry on. We need to show the world that we can be different and still make a difference. And I know now that the very thing that defines me — my disabilities —can also provide OPPORTUNITY for me. I love being with people, and helping people. And I love animals, and taking care of animals. I want to dream and follow my dreams.
I know I will find my way, doing things that I love, making new friends and creating a circle of supporters who will be there for me and embrace me as I am.
Jesse A. Saperstein
If we must use the term, “Disability” in our English vocabulary then we should at least revise it to read disABILITY and emphasize the talents that must come to fruition with proper support. As a 33-year-old man affected by Asperger’s syndrome, which is the mildest and most misunderstood form of autism, it seems as though society is finally focusing on my abilities.
I came of age throughout the 1990s when there was no such thing as an Anti-Bullying Movement and disabilities deserving of tolerance were reserved for only those that were visible such as someone in a wheelchair or a child with Down Syndrome. Any other subtle difference made someone vulnerable toward bullying especially if it involved social challenges. Bullying was seen as the natural consequence that came from an alleged refusal to conform to what was considered to be normal. There was also a term used to describe someone who had differences but was also considerate, talented, hard working, ambitious, and honest. These youths were labeled as losers, and many will live with the scars forever.
While I may still be haunted by memories of bullying, the scars have not stopped me from moving forward or teaching society that Autism is synonymous with Awesomeness! Asperger’s syndrome prevents me from “letting go” or “moving on,” but this leads to solving problems in unusual ways. In order to make a point while trying to end bullying, I created YouTube videos in which I went skydiving for the first time and delivered an entire speech while hooked up to a phlebotomy machine. These eccentricities have now led to a sort of celebrity status as a professional writer with Penguin Group (USA). I have also been dwelling over having lost my teaching and human service career nine years ago. The unrelenting drive to earn everything back has led to success in environments where many people with stronger social skills would have failed. I thrived as an assistant funeral director because a weakness turned into my strength! Success has come from the inability to “let go,” which is a quality that had been vilified for most of my life It has occurred that I have suffered for so long to eventually escape and have the fortitude to help others who are in the throes of Asperger’s syndrome. Some people are disabled by other factors other than the innate challenges of the condition, too. The ultimate goal is to recruit other individuals who are on the autism spectrum to surmount their challenges so they may join me as role models. Together we can also put an end to the devastating rate of unemployment for my peers by coaxing employers to pay attention to the ABILITIES that will create model employees!
Amanda Wolfson
THE SUNSHINE OF MY LIFE By Hilary Schwartz Wolfson
How ironic was it that as a new mom in the late 80s, I was “encouraged” by family and friends to join a “mommy and me” group to help me harness my “inner mama,” and get the support and smiles that new mom’s craved at a time when they felt like a loose button, barely hanging by a thread.
So, with my brand new Baby Gap diaper bag in hand, I jettisoned over to a “friend’s” house at 10 AM on a Thursday morning, preparing to share a big mug of joe, mini muffins and gabby conversation about the least gassy baby formulas (I couldn’t breastfeed Amanda for numerous reasons), Gymboree classes (they were quite popular at the time), and the parks with the best duck ponds (I was obsessed with feeding loaves of Wonder Bread to those adorable little orange beaked quackers after reading, Make Way for Ducklings!).
As we sunk our butts into a cozy modular sofa, rocking our little ones in their infant seats to keep them smiling or sleeping, I placed four month old Amanda on her back on the floor so I could nibble on her toes and soak up her oh so delicious four month old baby smell that always seemed to calm me better than the glass of Cabernet that I would sip with my cold meatloaf and soggy peas at 5 PM.
As I had one dimpled toe in my mouth, I heard one of the mom’s ask me, “hmmmm. Why doesn’t she smile? I don’t think I’ve ever seen her smile.” I kept the little toe in my mouth a second longer to make sure she was in fact talking to me. When I realized she was, I sat up, looked at her quizzical face, and turned back to my girl, rubbing her legs and feet like Aladdin’s Magic Lamp, hoping that I might come up with an answer that would appease this well coiffed mom with a Binky in one hand, and a condescending attitude in the other.
I don’t know if I ever did answer this mom’s question, but I do know that after excusing myself to go to the bathroom, doing nothing other than stare in the mirror and plan my escape, Amanda and I left this morning Mommy and Me “get together” within 20 minutes of my arrival, never to return again.
What I didn’t know then, that I found out a few months later at the neurologist’s office on Northern Blvd in Great Neck, NY (I’m a proud Long Island native), was that Amanda didn’t smile, laugh, sit, roll over, talk or walk like all of the other “normal” babies that cooed and crawled, because she couldn’t. Diagnosed as “developmentally delayed at 9 months, that “delay” eventually morphed into a developmental disability, that later on morphed into a host of associated neurological disorders that are a part of this pretty awesome 20something’s life to this day. But newsflash, tactless mom, from that 80’s mommy and me group: Amanda smiles every day and hopes you’re doing the same! Cause that’s the kind of girl she is....
Amanda’s medical history is unquestionably a complex one. Born with a submucous cleft palate which presented itself as a perfect little open slit down the center of her pretty pink palate, Amanda had uber amounts of difficulty drinking from bottles (nipples had to be enlarged so she could suck) and sadly, once the poor thing did get “her suck on” and get the formula in her mouth, it usually ran right out of her nose like a water faucet. Needless to say, that hurt like a son of a bitch because Similac (or Enfamil), was never intended to come out of a baby’s nose. As time went one, she was diagnosed with Failure to Thrive (she simply stopped growing and gaining weight) at the age of four, and then soon after, was diagnosed with a growth hormone deficiency by one of the best endocrinologists in the country (who also had an amazing heart), who prescribed growth hormone injections between the ages of nine and 13 (when thankfully, her own hormones kicked in, which allowed us to wean her off the five times a week injections to three, and then zero!).
Suffice it to say, betwixt and between all of these medical conundrums and challenges, Amanda was also diagnosed with a severe form of Tourette’s Syndrome and OCD (at the age of 6) and associated mood lability (as a tweenager). We dealt with these issues as they came, never once thinking that they were deal breakers. They just “were.” And life moved on, as it tends to do.
Amanda was, and continues to be, the consummate trooper, dealing with every new diagnosis with grace, dignity, bravery and the resolve to keep on, keepin’ on. Nothing, and I mean nothing, has ever stopped this petite little bundle of love and light to keep moving forward, taking the (woefully large amount) of meds that continue to be prescribed, and participating in the treatment modalities that hold promises of hope and healing.
Today, Amanda is a sassy, smart, stylin’ young 28 year old woman who goes to a day habilitation program 20 feet from our front door (gotta love small towns), and lives a life that I probably never would have imagined she would be living 20 years ago. She is mindful of her differences, and often expresses her dismay that “mainstream” folks (young and old) stare at her more than she’d like, frustrated that people “can’t be nicer,” and “more polite.”
I am forever hopeful that with grassroots groups like The Difference Project, and everyday folks having thoughtful conversations with all of the “Amanda’s” out there, “really listening” to how they feel and how things might get better, then perhaps we won’t even need to be writing blogs and posts like this one, or if we are, it’s because the conversation is really making “a difference.”