Stop calling us "special needs _______"

Seriously, stop it!

- My son who has autism has an aide at school because he has "special needs."
- My wife has a custom van, equipped with hand controls because she has "Special needs."
- This lady I know had a seat installed in her shower, because she has "Special needs."
- We widened our bathroom doorway, so our daughter with "Special needs" could get her wheelchair through it.

As a child the term "special needs," felt isolating, and patronizing. As an adult it's downright infuriating!

Say it with me I have a DISABILITY! (if you want to get technical - I have a few disabilities). I am one of the 56.7 million people in the US living with a disability. As a community we don't have special needs...We have needs.

There's nothing special about independent daily hygiene. The girl whizzing past you in her hot pink wheelchair doesn't have special needs... she needs to get to class. Me sitting in my adapted car, in rush hour traffic is as normal and mundane as it gets. The amputee you saw open the Ketchup bottle with his teeth didn't do so because he has "special needs." He just didn't want to eat a dry hamburger. It was 89 degrees out today. I needed my ceiling fan on. That took a step stool, some acrobatics and a salad tong. ... not because I have special needs, but because I needed to cool off.

We live in a world that wasn't built for us, and we know it. We're innovators!

No one said Thomas Edison had "special needs" because he needed light after the sun set.

We can't promote inclusion, and gloss over a series of challenges by calling them "special needs." The two can't coexist. If you take my "average" and apply it to you "normal" my needs will always look "special," because they look DIFFERENT!

Just hearing the words "special needs" can send some people into a panic.

-Will I be able to teach him using my current teaching methods? Maybe he should be in a special ed class.
-If I hire her what type of accommodations will I need to make?
-Are you sure she can raise her child on her own?
-

Sure,  the term"special needs," made our parents feel comfortable. It's a nice Politically correct term, that allows people, groups and organizations feel progressive.

But it's decisive. It discreetly categorizes us into those who can and those who can't!

We've all seen the feel good video of the small coffee shop that employs people with Down Syndrome. Aww isn't it so kind that, the shop owner wants to give people with "special needs" a job.

We swooned when we saw the picture of the football player taking the "special needs" girl in a wheelchair to the prom.

Stop smiling and swooning ....

Stop saying special needs!

Well well ...well ... I'm back.

It's been quite some time since I last posted. "I'm too busy." I said. Yet, somehow I found time to take online surveys, earning amazon and Walmart gift cards. I'v taken countless Facebook quizzes. I now know what type of onion I would be, what Disney princess I look like and what color my soul is. Sounds real busy, huh?

The truth is I haven't been inspired, and I ran out of words. How many ways can I say I'm now a badass woman who once upon a time was terrified by her own reflection?

Last night, I realized my 22 year old self, reared her misguided head, and I hadn't noticed. Through the proverbial rear view mirror I was forced to confront some of my decisions over the past two years.

At 30, I threw the Molotov Cocktail that was filled with the insecurities of high school, and rejections of collage. I watched it explode and burn before me. I had never felt more liberated than I did the day after my 30th birthday party.

Around 35 I went from getting dressed up and thinking I looked "nice" to thinking "Damn I'm hot!"

In the fall of 2016 I met someone, who I'd admired from a far for a decade.That person made me feel beautiful in the most intimate of ways. I wasn't too small. I wasn't too scarred. I just was. In an instant I thought this person "gets it." He was physically and philosophically my equal. I thought this person could be the Yin to my Yang.

I never communicated that. Our communication was sparse, at best. So I assumed any  talk of Yin yangs would be a bit premature. So I did what I do so well .. I acted. I tried to meet him where I THOUGHT he was. I was not my authentic self, because  I assumed  what he would want was a slightly altered version of who I am at my core.

I heard through the grapevine that he found his yang, and she is closer to to who I truly am, than I was two years ago.

You can't claim self love while trying to reshape yourself to fit inside the crevices of another's mind. The two can't coexist. I can't love my scars and try to scrub them off at the same time. I can't share my desires if they change depending on the audience in front of me.

One must not confuse growth with change. Growth is an organic process that should be embraced. Change is something mechanical that requires effort. Great thought is needed to  "change." Growth can happen when when you're not even paying attention.

Always grow but never change.

It's like the inside of a tornado

I've been telling everyone who'll listen that I'm almost two years seizure free. I was met with a very intriguing respone from someone very close to me: "What does a seizure feel like? Do you remember what they're like?" Of course I remember what they're like, but it's not something I ever ever thought about, in descriptive terms. "How do you feel?" someone would ask, after a seizure would end, and I could communicate again. "Tired, and scared." Is how I would, always respond. By the time they were over I my body would ache, and mentally I'd be exhausted. I never gave much thought to what the actual seizure felt like.

It's like being in the inside of a tornado! Except there is no weather forecaster to tell you one is coming, so you can board up your windows and protect yourself.

I remember the first seizure I ever had. It was 2005. I was driving, and it started to snow. I'm from New York, snow is nothing unusual here. The start of that day's flurries sent me into an indescribable panic. I got lost one town away from the town I grew up in. I was on roads I had traveled several times before. Under normal circumstances I wouldn't have been lost. I took out my cell phone and started making random calls asking for help and directions. In the middle of that tornado I saw people, and landmarks that didn't exist. What I didn't see was the tree that did exist, that my tornado pulled my car right into.

 I was blessed (and cursed) with awareness during my seizures. I could see the world as it spun around me. I couldn't slow it down, or control it. I was aware of the panic on the faces, of those around me. There was no  pause button, to slow things down for the 15 seconds it would take for me to say, to them,"I'm ok!"

There's a loss of control, that you don't willingly give up. The irony of being rendered powerless by the, same body part that gives you control of your entire being, is sickening!

I distinctly remember, having a seizure, while sitting with my back against a wall. I unwillingly started banging my head against that wall. I thought, out loud: "Taniya, stop banging your head! You already had one Brain injury, do you want another one?" As the tornado spun, my physical body would not make the connection with my cognitive thoughts!

Maybe it's true: To think is easy to do is hard. Is that why they say talk is cheap?

Much like the fictional tornado, that takes Dorothy to Oz, all you want to do is find your way back. You lose what feels like hours, of time in a matter of minutes. Then you spend the next few hours picking up the fragmented pieces of what was your day , before the tornado came pummeling through you.

Dorothy get's caught in a tornado and sees a tin man, lion and talking scarecrow. During some of my seizures I've seen: a purple house, a cop wearing bunny ears, a black man delivering Chinese food and two Asian men dancing, in my hospital room, and a talking unicorn with an English accent.

...It's like a tornado. Having a seizure feels like getting trapped in the center of an out of control tornado.

Exploitation, inspiration, admiration. what makes that distinction?

There's been an ongoing dialogue, within the disabled community, about the "I word" and wether that's a compliment or downright  blatant exploitation.  Most of the question,  stems from the barrage of images depicting a disabled person doing something "extraordinary." In many cases these "extraordinary" moments, are fleeting everyday activities. Such images have, even, been dubbed "inspiration porn." I have a dog in this fight, and to be honest even I don't understand that.

The idea is that we are exploited to give able- bodied people something to be grateful for.  Somehow my existence fuels someone's hope, and appreciation for having a "good life" isn't an idea that I subscribe to. I took this idea to my sister. She's 5 years younger than me, and has lived through the good, bad and ugly with me. she's "able- bodied" but has a very clear, concise understanding of what it means to be disabled. I asked what things went through her head when she saw someone in a wheel chair pushing a shopping cart, or an amputee driving. She said "it's normal. Everyone needs to grocery shop." She was quick to point out that growing up, in our house, there was nothing abnormal about wheelchairs, walkers and physical "abnormalities." I then asked her if looking at me, and knowing my physical limitations ever made her feel better about her life. She said "No. If anything I just never understood how you did it." Did what? "Did things you knew you couldn't, and accept that things were hard for you, ignore that people stared at you." I know she's bias. But if that's what the world thinks when they see the amputee on top of a mountain, or the woman in the wheelchair snuggle her baby that's admiration, not inspiration. We're using the terms interchangeably, and they're not!

 I've been completely open and honest with regard to how I feel about the word "inspiration," but it bares repeating. I want to inspire. I relish opportunities, when I can do so. I'm in the unique position where my life, has given me wisdom, and tools necessary to navigate through some really dark times. I want to share those parts of myself. Where I draw the line is at being an "inspiration" for living a mundane everyday life. Being inspired by my trip to target is metaphorically patting me on the head saying "Good brave girl you ventured out into the world all by yourself."

However, we're a society that thinks in images. A picture is still worth a thousand words. And yes, there is something very "inspiring" about a photo of a person defying the physics of their own body. That's  reason the world loved Oscar Pistorius, and affectionately called him "the blade runner." To this day we can see a picture of Martin Luther King, and still admire the bravery and courage it took to be him. He inspired a world to change.

To be inspired by someone doesn't mean we had to pity them first.
 

Is it a change of heart or giving up?

What is it that separates changing your mind from giving up on your current situation? That's a good question, isn't it? It's a question that I've recently been challenged with.

I've always advocated living with passion. I always tried, my best, to live my life by that. If I don't have passion for it I feel it's not worth doing. That being said; I've noticed that my passion has been guided by the possibility of success.  I found myself locked in my comfort zone. I rarely venture outside of things that I'm good at. That probably explains why I've resigned myself to being an eternal student. However, as I've gotten older my priorities have changed. It's no longer the possibility for  success that drives my passions. It's the other way around, as it should be.

I'm struggling to get to the most recent goal that I've set. I've lost the passion for it. One might ask "which came first the chicken or the egg? Did I lose passion because I'm struggling? Or am I struggling because I lost passion? After much introspection I can say with 100% clarity that I don't have the passion to propel me forward in this direction. While trying to make myself feel something I no longer do I'm making myself miserable. I'm not in pursuit of a passion, right now. I'm pursuing SUCCESS. I'm going after a way to make a life for myself, in which I'm well paid and live a comfortable life. A career in medicine is something great and something that I did have passion for. At  some point down this path that passion fell apart, where it is merely fragments that lay at my side.

When you put your focus on what your heart wants often your ideal changes. So yes, you can have a change heart the minute you let yourself be guided by it. Once I quiet the practical brain I see I'm not having a "change of heart" A change of heart is when you allow yourself to be guided and fueled by a passion that may lead you down an impractical path. "Giving up is a conscious decision to stop trying altogether.

I've never given up on anything in my entire life! However, I do reserve the right to to have a "change of heart."  

Moving mountains

I recently began a rapport with someone, incredible. I wont apply the pressure of saying he "inspires" me me. But I can say that he makes want to be a better version of myself. Occasionally the topic of mountains comes up. I can't help but see the beauty in that metaphor, as it applies to the human condition.

The most glorious lie ever told is that self belief is all you need. Society perpetuates the story of "The Little Engine That Could." - "I think I can, I think I can ..." It's a resounding untruth that is forced upon most of us. Especially, those of us who face any challenges.  Here's what we're not told: Self belief without actual application is just a dream, that will probably never come to fruition.

We are all standing before a mountain. Regardless of the size we are all staring directly at some mountain. And there we stand with all the faith and that we can get past this mountain. We believe we can. We have that faith someone or something will get us to the other side of this mountain. Some of us stand there and scream "Get out of my way!" Some of us get frustrated and emotionally cave to the grandeur of this thing before us. We doubt everything we thought about ourselves. Because we stand here believing in ourselves and in our abilities, but this mountain wont listen. We can't get it to move!

Here's the truth: This mountain can't move. It is a part of the earth, a formation that existed long before  we got here. We'll never be able to make it move, and we can't magically walk through it. The only way to the other side is to take the long trek up: become bruised, watch the calluses form and allow yourself to feel your grip to hold on. You'll most certainly feel the ache, and fatigue but you don't stop, because you know you'll fall and all the previous work will be for naught. And when you think you cannot make another move you realize you're at the top. From there you can scream to the world: "I am bruised, and I am tired, but I am now as strong as I BELIEVED I was. Then with very little effort you descend the other side. And there you stand seeing things unfolding that were previously blocked from view. Undoubtedly, there will be another mountain. It won't necessarily be any smaller, but will be far easier to climb. The strength, courage and endurance that blossomed inside you, as a result of that first uphill climb has set you up for the next one, and the one after that .... and thus success is achieved. And the world will look vastly different from the opposite side of every mountain you climb. So don't tire yourself out screaming, and begging for that mountain to move. Take  all you have right now, strap it to your back, grip tight and start climbing.  

What we leave behind

When our tombstones are carved they will inevitably have the date we were born a ----- followed by the date of our death. We all know the date on which we were born. Our loved ones will sadly know the day we died. But who will really know the   -----? What seems like a pointless way to separate those two dates is really everything that we've done in between.  That dash interrupts who we were when we we arrived from the person we were when we died. That represents an entire life  lived. Who will know, or care about that "space.?" I think everybody wants to leave behind some kind of "legacy" We all have the desire to be remembered, and to mean something. Therein lies  our quandary. 

At it's root what does it actually mean to "mean something?"How many people must one impact, or share themselves with to feel like they've meant something? The answer to that question is there is no real answer. We're bombarded with images of people who, in our eyes, mean something: Men contracting the Ebola Virus trying to help children, who have it, in Africa. Veterans returning from a war, most of us know little about. Commercials of people wrapping wounded puppies in blankets while a depressing  Sarah Mcgloghlin song echos eerily in the background. Then we're moved, and touched, and sometimes even envious of these glorious beings that are doing things that will ultimately "mean something." It's a vicious trap that is so easy to get caught in.

I'm extremely guilty of this. I've always known that whatever I do would be great. But I also knew that I needed it to be profound, and have a huge impact. As far back as I can remember I've wanted to change the world.  When I was nine I sat in my parents kitchen, with my Smithsonian Chemistry set convinced I was going to find a cure for AIDS. With every bubbling reaction a created I believed I was on the cusp of saving lives. I ignored the fact that every bottle in that set had a label that read "Warning harmful if swallowed."  For years my quest for greatness marched on. I wanted to find undiscovered planets that I'd tell NASA about, and ultimately have named after me.

Was I a narcissist or just really naive? Perhaps a little of both. The quest to mean something and impact people is at the core of who I am. Yet I'm forced to question why I want it on a grand scale. When I'm gone I have a desire that everyone knows what that dash between my dates of birth and death meant. And that is where I've gone astray. 

I saw a man at the gas station, the other day. I asked him to help me with using my debit card at the pump, because I can't see the screen. He graciously gave me assistance, and in a roundabout way told me he hoped the 5 dollars he had would get him home to Farmingdale. I knew with the price of gas 5.00 would barely get him down the street! I thanked him for his help and ran inside and paid the clerk 10 dollars for that man to have an additional 10 bucks worth of gas. That man was extremely grateful, and thanked me more times than I can count. When we parted ways I knew, regardless of how infinitesimal   I had meant something. In that small act of kindness I had an impact on someone's day. 

While little things may not be life changing, or world enhancing. They do make the world a slightly better place. It was Ralph Waldo Emerson who said:  "The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.”