Why My Disability Doesn’t Make Me Your Inspiration

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Early on in my work as an autistic advocate, I heard one message wherever I went: You’re so inspiring!

Inside, I had mixed feelings. I really do appreciate the kindness, and I know that people often lack a deep understanding of disability, so they use the words they know as best they can. But part of me still cringed, not at the individual but at the fact that it’s such a widespread belief in our society. To a person with a disability, hearing that someone is inspired because they’re… existing…  sends some pretty gut-wrenching messages. It makes me think that when you imagine being in my shoes, you probably wouldn’t find it worth getting out of bed in the morning to experience whatever it is that has brought us together. It’s saying, “You have it so bad that you’re a brave soul just for getting dressed and leaving the house.” It’s insinuating that I’m somehow remarkable for doing everyday things, like the man who told me I was so inspiring for talking to my best friend. It’s as if anything done by a disabled person becomes an immediate inspiration.

When I write or present at a conference, I’m just doing what I do. Your work might be in an office or a school. Mine is mostly behind my computer and sometimes at an event. I’m doing what I do best in a way that I hope will benefit others. I use the mind I’ve always had and the only body I’ve ever known… just like you do. How would you feel if someone said they’re inspired that you have the gumption to appear in public, being as short as you are, or that they’re inspired by your willpower to walk from here to there? You’re just doing what you do with what you’ve got.

When you post a meme of a person with Down syndrome accompanied by the text “the only disability is a bad attitude,” it works against what I strive to do every day. It can be hard to fathom, but disability doesn’t mean that anything is wrong with anybody. There are certainly cases of people who are very sick (I fall under that category, too), and that can cause suffering, but that isn’t the same thing. Disability means that a person has a mind or body that works differently than the majority of minds and bodies in society, so the world isn’t set up for that person to succeed.

Autism is a disability most often because a large majority of people are not autistic. But, if “the only disability is a bad attitude,” then am I to blame for struggling in public? Why should a boss provide accommodations for a blind employee? Just think more positively, Pete, and you’ll be able to do your work! Why should a school have IEP plans? A hip-hip-hooray or two is all that’s needed for any student to succeed! And, to paraphrase the awesome disability advocate Stella Young, when a wheelchair user approaches a staircase, a big smile is totally going to turn it into a ramp. Right?

… Wrong, of course. Disability is a cultural construct, but that doesn’t make it less real. Accommodations must absolutely-always-and-completely be available to those who need them.

There’s another meme with a person with prostheses running and the statement that “your excuse is invalid.” It reminds me of 10th grade gym class, when the day came that we had to run a timed mile. I’ve had type I diabetes since age 3, and that morning in gym class, my insulin pump malfunctioned, making my blood sugar almost 600, which is critically high. For most people, it’s go-to-the-ER kind of high, but it’s happened enough times that the ER couldn’t have done anything I wasn’t able to do for myself. It was just a matter of time for it to come down.

Then, my gym teacher told me that if I didn’t run my mile that day, I would get an automatic fail. I ran it during my lunch period. That meant no lunch. I hadn’t had breakfast because of the super-high blood sugar, which was still significantly high at noon. But I wasn’t going to forfeit my front-running place to be valedictorian in my 500-person class because of a lousy one-mile run. So… I ran it.

Halfway through, my legs gave out. The gym teacher didn’t even stop the clock and didn’t come over to check on me. Maybe she wasn’t watching. Maybe she was talking to someone. But that grade could make or break my high school career, so I didn’t have a second to spare, and, quite stupidly, I finished. the. freaking. test.

Though the horrible quip about my excuse being invalid wasn’t on my mind at the time, isn’t that exactly the kind of behavior it’s supporting? I had completely internalized that influence, that I should ignore the signs that maybe I should quit. Maybe it was time to take another direction. Maybe it’d be OK to say no to something that isn’t safe for me to do, no matter what other people thought.

It’s also saying that disability is never a reason to say that I can’t do something. It’s saying that accommodations are not necessary, that people should just try harder and do the thing. It blames the person with a mobility disability for being unable to walk. It faults the autistic person who cannot speak for not working hard enough.

Finally, it’s sending the able-bodied person the message that, dude, at last you’re not this screwed up. If this seriously broken person can do the thing, then certainly you can do the thing.  It’s making you feel better about yourself and your circumstances by feeling pity for someone else — me. Instead of feeling inspired because I got my master’s while in a nursing home, which gave me a way to pass the time and do what I love every single day… how about being outraged at the lack of reasonable housing options and then speaking up about it? Much of the time, my disability is less of a problem for me than society’s ideas about it.

I still interface with the public as an autistic advocate, but I’ve learned some ways to encourage people to be inspired by things other than my disability status. I don’t want people to hear about my health battles or challenges due to autism and think to themselves, my goodness, if that girl who is that broken can succeed, and I’m not nearly that messed up, then surely I can do it. 

What I do want is for people to meet me and think to themselves, holy mackerel, that girl is something! She’s enthusiastic, kind to others and passionate about changing things. To highlight that message, I weave other aspects of myself into my stories about disability, things like faith, family and mentoring. I broaden my message to show both how autism makes my experience very different… and I also share the ways that it really doesn’t make me different at all.

People still tell me they’re inspired. I love when they say, “You’re so passionate about what you do.” I am! “You’ve found God’s plan for your life.” I have! “It’s awesome that you’ve followed your dreams.” I agree.

But think about it for a second… those things aren’t related to disability. They aren’t based in the ways autism makes me different; they’re the ways it makes me just like everyone else. Everyone has those chances. If everyone follows their dreams, we might find inspiration a little harder to come by, but that’s just fine with me. A little less inspiration in this world… and we can trade it in for a lot more joy.

Follow this journey on Autistic Speaks.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

 

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Comedian With Cerebral Palsy Models in Fashion Week’s Most Inclusive Show

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When clothing designer Carrie Hammer went to put on her first fashion show, she knew right away it wouldn’t be your average New York Fashion week showcase. Hammer’s clothing is for real people doing real things in the world, so it only made sense to ask her real life clientele to walk the runway for her. She asked her clients, many of whom were CEOs and business executives, to model the clothing in her show, and Role Models Not Runway Models was born.

Among the CEOs, architects, entrepreneurs, Olympic athletes and advocates who have walked the runway for Hammer, a few of the most memorable were Karen Crespo, who lost all her limbs to bacterial meningitis,  Danielle Sheypuk, who uses a wheelchair, and actress Jamie Brewer, who has Down syndrome.

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Carrie Hammer with  Karen Crespo, image courtesy of Carrie Hammer
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Danielle Sheypuk, image courtesy of Carrie Hammer
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Brewer at the February 2015 show, photo by Marc Hall

Hammer’s inclusion of incredible women of all abilities continued this year, as comedian, actress and disability advocate Maysoon Zayid, who has cerebral palsy, took the stage alongside 26 other role models, including Olympic figure skater Meryl Davis.

“I think what’s interesting about Carrie is that if I thought she was using us in any way or if this was just a publicity stunt I would have nothing to do with it,” Zayid told The Mighty days before the show. “She genuinely believes this is a platform she can use to elevate women and introduce them to other women who look like them, dress like them and act like them. And at the same time, she’s designing really beautiful clothing that anybody of any size, body type or ability can actually wear.”

Maysoon Zayid working the runway for @CarrieHammer #rolemodelsnotrunwaymodels #NYFW

A video posted by The Mighty (@themightysite) on

“I love, love, love the dress that Carrie designed for me,” Zayid said. “She took great care to design a dress I could actually wear in real life. It opens and closes in the front which makes it more disability accessible for people with any sort of coordination issues. It’s an amazing piece of clothing and it’s beautiful and it’s sexy.”

When asked about the lineup for her show on Thursday, September 10, at Mercedes-Benz Manhattan showroom, Hammer responded enthusiastically.

“They are so badass, it’s insane,” she told The Mighty.

The former advertising sales executive began designing her own clothes after she became frustrated with the limited options for professional women’s apparel. Designing became her passion — she went back to school for it and then launched her own line four years ago.

After her first fashion show, Hammer began receiving hundreds of messages from people who were inspired by her work — one email said,”You’re building the kind of world I’d like to raise my daughter in.” Messages like these let her know she’d created something important.

“I thought what a big platform it is, and I can actually help to change things and change people’s minds about what it means to be a model,” she said.

Check out photos from Hammer’s 2015 New York Fashion Week show:

Photo via Melissa McGlensey / The Mighty
Photo via Melissa McGlensey / The Mighty
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Zayid with some fellow Role Models. Photo via Melissa McGlensey / The Mighty
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Courtesy Carrie Hammer

Now, Hammer’s line has grown — her first international fashion show will take place in Shanghai, China on October 18, but her mission remains the same — to empower women.

“I hope I’ll continue to show women that role models are the new models. I call it the runway revolution,” Hammer told The Mighty. “This is my platform and I want to change the entire fashion industry. I know this is my life imperative and my call to all brands and the rest of the fashion industry.”

Visit Carrie Hammer’s website to purchase her designs, including the disability-friendly “Maysoon” dress. However, be advised that it may take several days to upload the new items from the show to the website. 

Related: Watch Zayid’s viral TED Talk.

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Why Trying to Be ‘Normal’ Almost Ruined My Life

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Ten years ago, I thought I understood myself and the boundaries of my life.

But I’ve always been a little hard to understand, so maybe that should’ve been a red flag.

Let me explain. As a result of my umbilical cord being kinked during the birth process, I developed a pronounced speech impediment, as well as some gross and fine motor coordination deficits. The medical label for this type of birth trauma is cerebral palsy.

To my way of thinking, the cold, hard facts were that I’d been given an enormous, almost insurmountable burden to carry through my life. That was that.   

Not to mention, talk about bad luck! I developed an injury that became a permanent part of me all before I even had a chance to dirty my first diaper. Come on!

For most of my life, I oscillated between hating my cerebral palsy, being frustrated with it, denying it and downright pitying myself for the injustice of it all.

I thought I understood what would improve the situation. I figured my life would be magically transformed and in countless ways made more abundant, if only my voice and coordination suddenly became “normal.”

Now in retrospect, I see how convenient it was for me to devote vast quantities of my energy to wishing, fantasizing and pining after a normal life.

Maintaining this focus on hoping for some kind of miracle cure to propel me into the ranks of normality definitely had its benefits. Simply put, I could avoid finding the courage to fully live the life that was already mine to live.

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I could’ve skipped working up the courage to take my first yoga class. I could’ve taken a raincheck on discovering the courage to move, by myself, from the South Dakota to San Diego. I could’ve skipped finding the courage to speak to that first group of people, the first group I spoke to since college, when I only did it because it was assigned. I could’ve avoided digging for the courage it has taken to speak to the countless groups since then.

I could’ve spent my life thinking I would do it on the day I became magically “normal.”

I could’ve ruined my life wishing to achieve normal.

Luckily, I didn’t. But wow! Did I ever come close.

Being physically normal has become our default gold standard. Ironically with 7 billion people on Earth, normal is an utter myth that doesn’t represent any tangible standard at all.

I almost sacrificed my life to the myth of normal.

The truth is you and I are each magically unique.

It’s time to live our magic.

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Classroom Cage Used on Boy With Autism Sparks National Special Needs Debate

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A school principal in Canberra, Australia has been fired for allocating school funds to build a classroom cage for a 10-year-old boy with autism.

The six and a half by six and a half foot fenced in structure cost $5,195 and was built for one child in particular, who remains unidentified to protect his privacy, ABC News reported. The structure stood for less than a month before the Australian Capital Territory (ACT) Education and Training Directorate ordered it to be dismantled in March. It was intended as a “calm down space” for the child and was reportedly only used once.

The ACT’s report on their investigation into this “inappropriate structure” was released Tuesday, September 8. The report concluded the principal, who has been removed, was solely responsible for the decision to build the construction and hired an external party to build it.

The ACT also completed an investigation into the use of “withdrawal spaces” in other government schools but found no evidence of their use elsewhere in the system.

Education Minister Joy Burch called it an isolated incident of poor decision making.

This structure could not be deemed acceptable in any way shape or form, in any of our public education schools, hence it was withdrawn,” Burch said in April, according to ABC News. “I have also made assurances through the school executive and through our support teams that the child and the family involved is given the utmost support over this time.”

See more of Burch’s comments in the video below: 

 

One positive outcome to the disturbing incident will be the ACT’s increased vigilance on behalf of its special needs students. The government reports that it will now be appointing a Director for Families and Students, who will be focused on the safety and wellbeing of students, particularly the most “vulnerable.”

Also, in addition to the ACT’s original investigation into the cage, Tony Shaddock, an international special education expert and University of Canberra academic, will chair a panel that is conducting a review of the Australian government’s special education programs, according to a statement from the ACT.

The cage has sparked a national debate in Australia around how schools deal with children who have behavioral issues, The Canberra Times reported. The much-need discussion comes at a time when the Australian school system is dealing with an unprecedented number of students with disabilities and special needs, including autism.

It is about how we as a community understand and better respond to children with special needs and make sure best practice in place,” Burch said, according to the Canberra Times.

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5 Assumptions About Autism That Aren’t True for Me

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If you’re a newbie to autism, there are many assumptions about autism that have been fueled by stigma. I’d like to tell you a little bit about myself and how I differ from them.

1. Autistics avoid eye contact.

While true in many cases, it isn’t a given! For example, I’ve never struggled with it. I have no trouble looking people in the eye, and only close my eyes or look away so as to shut out other distractions while I’m trying to think of what to say while talking to someone. I feel totally comfortable exchanging glances.

2. Autism causes one to not want to socialize.

Not for this girl! I’ve been a social butterfly since day one. While I do have trouble reading between the lines and picking up on social nuances, I’ve never hesitated to walk up to someone and say hello. In fact, when I was about 9, I was on this kick where I’d ask random strangers their shoe size! I’ve also maintained friendships for many years and loved being a part of groups. I’m also a chatterbox!

3. Autistics always experience sensory overload and meltdowns.

This has never been the case for me. While I have certain tastes, sounds and textures that are rather unbearable, I’ve never experienced what a lot of people describe as overload. I’m a sensory seeker. I love flashing lights, feeling various fabrics and smelling scents that I find pleasant. I have meltdowns, but they’re more emotional. Sensory stimuli does not trigger them for me. When I melt down, I start crying whenever I feel that I’ve let someone down or my feelings have been hurt. It takes some time and reassurance until I pull myself together.

4. Every autistic has a savant skill.

Not always. While I have an affinity for Sonic the Hedgehog and am pretty versed in the Android operating system, I wouldn’t say I have a skill that I’ve mastered way beyond the point of my other skills. Special interests, yes, but I’m not a genius in math or can take apart a machine and put it back together. I have skills in a variety of subjects.

5. One outgrows autism.

Never! A lot of people assume that just because someone has learned to cope well with their environment and has survival skills, that they have outgrown their autism. The truth of the matter is that one learns coping strategies and how to navigate the social world as they get older. Many people, myself included, fall under the radar for many years before receiving a diagnosis because they’ve learned these mechanisms and have gotten by with the tools they’ve gained. People’s traits can also change over time. One may stim by flapping their hands as a child and then move on to fidgeting with a pencil later on, or vice versa. I used to pick my fingers really badly, but with medication and substituting fidget toys for the picking, I’ve cut down greatly.

So, there you have it! Here are just some examples of the beliefs that can exist out there and how they aren’t always the case. I hope you’ve learned something, and if you ever have any questions about autism, the best source to go to are autistics themselves!

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When Facebook Became My Lifeline as a Special Needs Parent

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I love Facebook.

It’s fun to see photos of smiling faces and breathtaking views from mountain tops at sunrise. I occasionally enjoy seeing a photo of a glistening filet of salmon nestled in a bed of artistically arranged kale and quinoa posted by a proud home-chef. And sometimes I chuckle at a cartoon posted by a friend.

But Facebook, to me, is more than a social connection with people I thought I’d never hear from again. It’s more than a chance to peek into the lives of former classmates or colleagues. And it’s a great deal more than laughing hysterically at autocorrect text bloopers.

As a mom of a child with a severe disability, Facebook is my salvation. It’s my connection to a world of people who have an understanding of a current challenge I am facing, parents who’ve experienced something I’m struggling with and families who’ve tried various solutions to obscure problems only those with medically fragile children can relate. It is also a forum to vent to people who “get it” because they have been where I am.

Thanks to Facebook, I have met other parents of children with Pelizaeus-Merzbacher disease (PMD) who hate the disease as ferociously as I do but adore their sons with an equal amount of love. Because of Facebook, my son Jacob has “PMD brothers” all over the world.

Jacob was born in 2002, a couple years before Facebook was invented. At the time, Google was in its infancy and I performed only minimal medical research online. Medical journals were not widely available in electronic format, and information exchange was mostly over the telephone and only occasionally through email.

I didn’t know anyone who had a child with challenges. I didn’t know anyone who was fed by a tube surgically implanted into his stomach because he couldn’t swallow. I didn’t have a chance to converse with other mothers who shared my sense of failure for not being able to nourish their children in the usual way.

In 2002, a suction machine was a scary piece of equipment, and I was terrified to use it. My hands trembled as I tried to snake the plastic tube into my son’s nose and down his throat to vacuum out the mucous that impaired his breathing. I would’ve loved to share my fears with other parents who understood what I was feeling. Maybe they would have been able to help me overcome my anxiety around that dreaded but lifesaving appliance.

I didn’t know anyone who had a child with such intense needs that he couldn’t be left alone even for a few minutes while he was asleep. I had no idea whether I would ever adjust to the new life I was catapulted into, and I had no clue how to figure it out.

Those early days were scary, depressing and isolating. Over time, I developed the patience and skills to comfort my son when he was in agonizing pain and screaming relentlessly for hours. Eventually, I conquered my fear of the feeding tube and was even able to replace a broken tube in less than a few minutes. But it took years before I was comfortable with the suction machine, something I use for hours every day at this point in Jacob’s life.

I can’t help but wonder whether it would have been a bit easier if I knew others in similar situations when Jacob was younger. I think about how things could’ve been different if I’d had a network of experienced parents with whom I was able to share my fears and celebrate my son’s “inchstones” (moms like me don’t celebrate milestones). I knew there were others in similar situations, but I had no way of meeting them.

As the years went by, technology started developing in ways that opened up the world to me. It started with a Yahoo chat group for families who had kiddos with PMD. It was the first online resource I encountered where people gathered for support, feedback and suggestions related to the challenges involved in raising a child with PMD.

I recently realized that Facebook is my invaluable resource. When Jacob was having feeding issues, I posted my questions in a Facebook group for Tubies. When I had a question about Jake’s scoliosis, I posted it in another group. Of course doctors have this information and always answered my queries to the best of their abilities, but getting a perspective from people who are living the answers has its benefits. Hands-on, real life experiences are key for moms like me. I access this information and add it to what I already know. It helps me make the informed decisions that I have to in order to care and advocate for Jacob.

The past 300 days have been the hardest of my life. Jacob was in the hospital for 237 of those days. He spent over seven weeks spread out over four visits in the intensive care unit with machines helping him breathe. And through all those excruciatingly long and harrowing days, I was never alone. Even when I was the only person sitting by his bedside, I had a gigantic network of people who understood what I was experiencing and people who were only a message away. I constantly received messages of support, read snippets of their experiences and was comforted when I saw a new “like” to an update. (As an aside, I wish there was a “dislike” button for heartbreaking posts.)

Facebook is my lifeline to the world of medically fragile and special needs children.

M+J

This post originally appeared on Her Magazine.

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