Water is wet, and I’m disabled.

Emma is one of the oldest and most treasured members of the BTWF family. On Monday, she gave a speech at her former community college and we thought it was such a special, brave, inspiring, and important story we wanted to share it with you here.

[Note from Emma: I give you full permission to laugh at my inappropriate humor, because I laugh at myself all the time. If I go **there,** you can laugh! My humor is a big part of who I am.]

Hi!  I’m Emma!  Water is wet, and I’m disabled.

People think disability is inherently bad, or makes life less than. I’ve been through a lot of struggles and I definitely have a body that doesn’t always work the way I want it to, but I’d argue the life I live with disability is way better than a life without.

I know the one question you’re probably all thinking but are too afraid to ask, which is: WHAT HAPPENED TO YOU?

Basically, I was born 14 weeks prematurely at two pounds, one ounce, and more or less came out looking like an underdeveloped alien child – my entire head black and blue with bruises, and my hands so small that they literally wrapped around my parents’ fingers. I sustained a brain bleed as well, so both of those factors together basically made for a perfect storm of spastic quadriplegic cerebral palsy, which is a “non-progressive” brain injury acquired at birth affecting movement (and quite honestly, the “non-progressive” part is super misleading). All four of my limbs as well as my trunk sustained some degree of paralysis due to (very, very) tight muscles and spasticity originating from the brain.

Obviously there’s no rulebook for how to raise a child with a disability, particularly when your parents were expecting a perfectly healthy child one second and then are given a laundry list of things I would never do the next (they may have been right on some things, but I proved them wrong in others). I spent my first three months of my life in the hospital. That wasn’t even taking into consideration the fact that I had two life-saving surgeries on my intestines when I was only days old to remove dying tissue. Between my birth and those surgeries, I was touted around the NICU as the miracle baby. Although it was pretty obvious I wouldn’t walk, other milestones involved the watch-and-wait approach – for instance, my first words were a MASSIVE sigh of relief for my parents.

To break it down a bit more (and with some humor), my CP affects me in many ways. From the bottom up:

Obviously, I use a power wheelchair. I don’t walk (wooo captain obvious), and require a lot of help just to move normally. If I were to face plant onto the floor right now, you’d have to call life alert, or someone who is physically able to move me – FALLEN AND UNABLE TO GET UP. There’s a moral to this story, folks: when your friend is trying to lift you into a car in the Cabella’s parking lot and is very clearly struggling, don’t be that a-hole that literally does nothing but stare out your car window as their car is parked next to yours for an uncomfortable amount of time and drive away. (This actually happened by the way.) By no means am I asking for a complete stranger to physically help, but I would hope that they would have enough common sense to actually do something or ask if I’m okay in the event they witnessed an emergency and no one else was around, so I’m not stuck on the ground for all eternity.

Moving to the trunk/spine, it’s very hard for to lean forward on my own and sit independently. Most of the time, if I were to sit in a regular chair without support, I’d turn into a collapsing jenga tower within ten seconds—also known as a fallen-and-unable-to-get-up situation. Unless I work really hard at it in therapy—and even then, it is very tiring. My entire spine is also filled with titanium, which makes me pretty bionic. For those wondering: no, I’ve never set off metal detectors—how I pulled that off, I have no idea.

My arms is where it becomes a little less obvious. They move, but my arm movement is still limited in places. To name a few things, I can’t lift more than five pounds. The dystonia in my left arm makes it frequently lock up and uncontrollably flail. I don’t write by hand pretty much at all because I don’t have the stamina and I write like a two year old. My fine motor skills are sorely lacking—in other words, don’t trust me with a pair of scissors because it won’t end well. However, I am able to do some things rather well to adapt. I type pretty fast and I’ve made it a goal of mine to write a memoir (in fact, I’ve already started). I’m also pretty awesome at driving my chair!

One area of functioning that came unscathed is my speech and cognitive function, which is totally awesome because it lets me be up here to talk to you all and make a bunch of insensitive jokes about myself.

Now taking all of this into consideration, how did my parents actually raise me?

As normally as possible.

As a kid, I was obsessed with Barbies, Britney Spears, and all things pink. I even got to play in the mud (for real). We took an awesome vacation to Florida when I was five—and they let us cut in line because hello, Cripple benefits. My parents treated me like anyone else (and they still do!). I was sort of taught to laugh at myself from the beginning, and I got my nickname of Cripple after literally being called a Cripple by a Walmart employee for using a scooter when I couldn’t bring my wheelchair (you can’t make this stuff up). I was never in a different school – there was never any doubt that I couldn’t be academically where my peers were.

What was different, though, was the fact that my family’s life pretty much revolved around keeping me healthy—and for that reason everything wasn’t always inclusive.

A lot of the things I remember about my childhood involve the hospital. Clinic days were family affairs. My mom would pull my brother out of school from time to time and he’d get to play the Nintendo in the waiting room, and I would see my doctors. For him, totally the BEST DAY EVER, but for me I was over the whole thing because I’d constantly get poked and prodded—x rays, range, pump refills and other completely boring sounding activities. My surgeon would tell my mom the graphic details of how I was getting cut open next, and I didn’t understand any of those discussions apart from the whole “you get to go to sleep and have a nice nap” at that age.

I still hated it, though. For years I’d have to get held down in the OR so nurses could put that terribly smelling mask over my face and put me out. To date, I’ve gone into the operating room around 30 times and been hospitalized close to 20 times, many of those for long extended periods, which is always fun!  (Please note the sarcasm.)

I feel like a lot of people with disabilities or chronic conditions don’t talk about the trauma that can come with their treatment, perhaps because of stigma and the need to “be strong.” My parents made some tough, tough decisions, particularly when it came to my surgical treatment. I hated every one and didn’t understand why I had to go through them, but for the most part there was considerable benefit. While almost every surgery I’ve had has been successful, there was one that was a colossal failure – that was my baclofen pump.

Baclofen is an anti-spasmatic, most commonly prescribed to treat spasticity in cerebral palsy patients. My PM&R at the time convinced us that by surgically implanting this device so that the medication could run through my spinal cord, I’d have less spasticity, less pain, require less surgeries and therefore have a better quality of life as opposed to oral baclofen. My parents made the decision to go through with the surgery, thinking it would be the best thing for me. We released my hamstrings a year later, but all things considered I was doing well.

Until I wasn’t.

I was in second grade, and at first I just started falling asleep in class. I can recall getting incredibly drowsy and thinking to myself, “Why am I tired? I went to bed on time last night.” Eventually it escalated into vomiting that was passed off as the flu. One thing turned into another and I became unresponsive, my pupils so dilated that the ER team thought I had died. My primary doctor suspected overdose but my PM&R was in denial about the whole thing, which led to a longggg rabbit hole of hospitalization as I fought for my life for a couple of months. At one point, it got so bad that doctors told my parents they’d be better off bringing me in their own car to the hospital, because the ambulance wasn’t going to make it in time.

This was TRAUMATIC.

I didn’t even understand what the word overdose meant and yet you could definitely feel the weight of the situation even as an eight year old. Tests showed nothing, and the doctors were dumbfounded. Meanwhile, the catheter inside my body was trying to kill me ‘round the clock. I had become pretty desensitized to hospitals even before this happened, but I absolutely hated that I was so sick. I began to question a lot of things, like “What do other kids think of me?”

Eventually the straw broke and and my mom drove me to Gillette. I was violently puking in the back of the car, and she carried me through the front doors begging for help. We took the pump out, I still had to go through an extensive inpatient recovery period. I was so traumatized by everything that had happened that I began to hide from everyone: my family when they would visit me, other kids who would try to talk to me, nurses when they would round.

It’s an actual miracle that I survived it and I should absolutely be dead – but it definitely had a lasting impact. I would scream and cry constantly at home especially during therapy sessions, and my parents chalked it up to being “lazy.”  The truth was I was just DONE with everything at that moment, was reliving trauma, and I wanted so desperately to be a normal kid. I’d get hit with flashbacks on the way home from school and be in tears, finally realizing the gravity of what I had gone through.

I’ve definitely learned from all my time in the hospital to not take anything for granted, as cheesy as it sounds, and I was forced to grow up faster than most kids. We always made the best of it, though, and laugh at the ridiculousness of the situations I was put in. My brother would mess with me on more minor surgeries, like when he literally brought his leftover pizza and taunted me with it while I was waiting (he got kicked out and the revenge was sweeeet). I’ve been visited by super creepy Easter bunnies, played Mario party while my brother gave me a broken controller (and then blamed it on the meds), and have had laugh attacks from Versed that are phenomenal.

Having opportunities to be like everyone else was one of the few things that made me happy. Anyone here remember how gym class made their lives hell? I actually really enjoyed it at times, particularly in elementary school, because it was inclusive. I got to try almost everything, even if I absolutely sucked (disclaimer: I sucked). I remember actually getting a chance to try to hit a T-ball, which I failed spectacularly at but I would have an absolute blast and all the teachers would woo and coo like I was their own child.

Enter the hell that was middle school.

In middle school gym, all of the opportunities from previous years were taken away. In middle school, it slowly became less about fun and more about brisk exercise. I’ll never forget the day that as 6th graders, my teacher dropped the ultimate bomb that signified, at least in our minds, we weren’t kids anymore: Running the mile around our school gym.

You should have seen all the students shudder.  Break out in cold sweats before it even started. Complain to teachers that they couldn’t do it, that it would be too hard. Meanwhile, what was I told to do?

Roll the mile. I kid you not.

While everyone else in the class was in complete agony looking like they were going to drop dead at any moment, all I had to do the entire time was drive around the room. It’s even more ridiculous when you consider the fact that I was being timed. “Look Mr. Smith, I shaved 10 seconds off my time by going full rabbit speed instead of part rabbit speed – I am exhausted!”

Unfortunately after 7th grade, I was pulled out of gym due to the fact that I was having some pretty serious health issues. I never had an opportunity again through my school to participate like I did when I was younger. It’s unfortunate, because I feel like there’s opportunities for everyone—disabled or not.

But summer camp made up for where my school failed. It was a camp for disabled kids, and it was an absolute blast. They had everything you could ever want—a pool, horses, a gym where I could do more than just roll the mile. It was entirely accessible. I went for years, eagerly anticipating when I would be able to get away for a week and be a “normal kid.” My cabin mates would stay up all night, comparing literal scars and stories from our childhoods, and laughing until we cried. I’m still friends with many of them to this day, and those are some of my fondest memories from when I was younger.

As I got older, I went through something a lot of adolescents do—not knowing where I fit in. I basically had a massive epiphany my freshman year filled with repressed memories from childhood and all the #$!% I’ve been through. I started to hate myself, questioning every “what-if” imaginable. How could my family love someone in a wheelchair, who needs constant help from others?!

To this day it’s still one of my biggest struggles, but I have an incredible support system with the best friends anyone could ask for that I can say with utmost certainty would not be in my life if I were able-bodied. Had I not met my closest friends, there’s a lot that would be.. different.  Both in my life and theirs.

Just to prove my point, I want to show you all something:

And yes, that was what you thought it was.

When I was younger, I truly thought that I had no one to call a friend – no one that had my back. I had no idea what I was going to college for and I had no idea what was in store for me as far as my health. Although there’s been many, many, MANY bumps in the road and I’ll continue to go through things like surgeries, I wouldn’t imagine my life any other way. I couldn’t imagine it any other way. Next year, I’ll have my BSW and hopefully, my dream job.

This diagnosis brought me friends. It brought me my passion for this field. It’s showed me what it means to laugh at yourself, what it means to persevere, and what it means to find joy in every moment.

Even if you don’t have cerebral palsy, I challenge you to do the same.

Thank you.

If you’re like us, you have questions – about life and health and mental wellness and relationships and friendships and school and careers and…pretty much everything. And what do you do when you have questions? You ask people who have been there, who can use their smarts and their experience to point you in the right direction.

We know the BTWF community is full of both people who have questions and people who have answers (or at least some really great ideas about where to get started), so we’re going to try an experiment to help bring the two together.

Introducing, Been There / Done That: a new video series from BTWF that takes some of your most pressing questions – the things you’ve been meaning to ask, the things you’ve been afraid to ask, the things you need to know – and gets answers from some of the smartest, funniest, kindest, and bravest people we know. It’s a little perspective from people who have been there, done that, and are a little bit wiser for it.

Here’s how it will work:

1. 1. We’ll announce a topic we know a lot of you are hungry to talk about, and you’ll send us your questions about it using this super easy form.
   2. Our BT/DT Expert for that topic will record a video answering your questions – big and small – and we’ll share it with all of you.
   3. Want to add your own perspective? Share a video on social media of yourself answering the questions – just make sure to include #BTWFBeenThere so we can all follow the conversation.

We’ll be kicking off Been There / Done That on February 14th with our very own Maya Smith, joined by her very own David Smith. In honor of Valentine’s Day, this awesome couple will be taking your questions on work / life balance when “life” includes two busy young professionals and two kids under the age of five.

Submit your questions for Maya and Dave here by February 9th!

Have ideas about possible BTDT Experts, topics, or just general thoughts about this little experiment of ours? Shoot us an email! 

Today we’re sharing a personal story from the friend of the foundation. This is a personal narrative about losing a friend and contains descriptions and information about suicide which may be triggering to survivors or to the family and/or friends of victims. If you or someone you know is struggling with suicidal thoughts, please seek help. You can call the National Suicide Prevention Lifeline 24 hours a day for assistance.  

When I think about suicide, my thoughts – perhaps selfishly – are flooded with the feelings those of us left behind experience: incredulity, devastation, overwhelming sorrow and a lack of understanding. “How could this happen?” “Why did this happen?”

These are two questions I found myself asking over and over again last Tuesday when one of my oldest and best friends took her own life. Despite my work in the mental health space, I was utterly unprepared, and – as we moved closer to suicide prevention week – the timing was hatefully ironic.

I shook. I sobbed. I became physically ill – I was so distraught that I ran my body into the ground all while posing these questions to everyone who had experienced this loss with me. But then I realized that the ‘how’ and ‘why’ I had been demanding were rhetorical – I didn’t expect a single person to actually provide me with an answer. I had already chalked it up to a “senseless act” that nobody could possibly make any sense of.

And here is where we as a society need to get out of our own way.

The reality is suicide is not about death – it’s not about someone wanting to end their life. Suicide is about someone wanting to end their pain, or penacide: “the killing of pain.” I had been thinking that I would never be able to make sense of her death, but when that phrase filled my inbox…

I. Got. It.

I might not have been able to make heads or tails of someone wanting to end their life, but end one’s pain? That’s perhaps one of the most human actions any of us pursue.

So why does wanting to put an end to suffering so frequently manifest itself in suicide? For me, the answer came down to one very clear point: conversation.

I feel like people who are suffering view suicide as the finish line to an exhausting race…a race that they feel has beaten them. The burden to change this tragedy is NOT on the shoulders of those in pain, but on their friends, neighbors, and their communities – on you and me. We need to promote the idea that ending pain doesn’t need to be a literal “finish” or death, but rather a process of working through the dark moments in our lives until we emerge in the light. We facilitate that work by talking about the things that plague us, and even more importantly we must hold ourselves responsible to be available for those conversations and allow them to take place without judgment.

I feel guilty sometimes about voicing my physical limitations and pains – my determination to carry oversized grocery hauls in one trip is legendary. But when we’re a community of individuals who don’t open up about the invisible wounds that can’t be mended with a band-aid, we set ourselves up for failure and heartbreak.

Pain is a given. It finds its way into each of our lives, an unwelcome visitor making itself present in physical twinges and internal, soulful aches. But by-and-large taking ownership of mental health – being open and vulnerable in expressing how and why you’re hurting – is not normalized. If we can change that, alter the status quo so that talking about struggles with mental health were as familiar as the phrase “I think I need an advil,” the benefit would be astronomical. We might not be able to obstruct suicidal thoughts or bouts of depression, but we could provide an outlet for help – an alternative rather than an ending.

So engage with your community – for your sake and theirs. Make eye contact as you walk down the street. Ask “how are you?” and mean it. Push through discomfort and allow yourself to have an honest conversation, because someone may need it. And as a person who is going through an incredibly gripping and difficult loss right now, I can tell you that I would welcome having a thousand uncomfortable conversations with my friend, because they would have been so much easier than never being able to talk to her again.

We’re teaming up Peace First to bring you the first ever Channel Kindness Awards! These awards will recognize young people for their incredible work to make this world a kinder, braver place.

Learn more about Channel Kindness Awards and apply today!

Every day we hear stories about people who are using generosity and compassion to power positive change. We want to highlight these amazing people and their work. That’s why we started Channel Kindness. And that’s why we’re taking Channel Kindness on the road this summer and fall.

We’re joining our co-founder, Lady Gaga, on her Joanne World Tour in 8 different cities. We’re looking for young people, ages 13-24, who are improving their schools and bettering their communities. We’ll be picking 8 winners who will each receive help from Born This Way Foundation and Peace First and a $500 prize.

Peace First views young people as natural problem solvers and creative thinkers, and invests in their ability to see themselves as leaders. Together, we’ll help youth bring their vision for a better world to life.

Tell us about how you’re improving your community and apply today!

Most of us had the occasional substitute teacher in school, but we bet they were never quite like the one that came to this Los Angeles classroom:

Today we are thrilled to unveil this important message starring our very own co-founder, Lady Gaga, as part of our partnership with Staples and DonorsChoose.org! Check out the video – and share it with your friends and family! – to see how Lady Gaga brought an extra dose of kindness with her when she visited a middle school earlier this month.

Staples, through their Staples for Students program, helps to make sure students have the materials and resources they need to learn and teachers across America use DonorsChoose.org to fund projects that address their students’ needs. Together, we’re teaming up to support positive school climates and inspire kinder classrooms.

According to a report by Sesame Workshop, 86% of teachers and 70% of parents say they worry often that the world is an unkind place for children. Born This Way Foundation, Staples, and DonorsChoose.org believe we can change that, starting with our schools.

Just check out these amazing projects teachers are hoping to fund to inspire their students to be kinder and support their emotional wellness:

• Help Mrs. Johnson in West Valley City, Utah provide her middle school class and their families with books that with reinforce the theme “kindness matters.”
• Help Mrs. B in Menlo Park, California inspire her students to express their feelings through journaling.
• Help Ms. Bolton in Rockford, IL create a classroom that supports her preschoolers social and emotional development through fun and interactive activities.
• Help Mrs. Trombly in Lowell, Massachusetts provide her special needs students with resources to support their unique emotional needs.

Want to help? Visit Staples for Students to learn how you can support this partnership AND enter to win a $50,000 scholarship and a trip for two to an upcoming Lady Gaga concert!