Bathroom sign saying "not every disability is visible.'

Observations From a Part-Time Wheelchair User

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I am a part-time wheelchair user; this means that one day I can use my chair, and the next I will be walking with my cane. Being able to use a wheelchair on a part-time basis allows me to manage my energy levels and reduce pain, allowing me to function more effectively in everyday life. I am exactly the same person whether I use my cane or my chair, so why does the behavior of others sometimes change?

Over the last few years, I have noticed people act differently towards me depending on the equipment I am using at that time. It was when doing my food shopping, of all things, that I realized what these differences were.

I noticed that if I used my cane people didn’t tend to mind. I would get a few inquisitive looks as they tried to figure out why a 19-year-old was using a walking stick, but apart from that it was fine. People in shops would talk to me, tell me how much the item cost and expect me to pay — good job really considering it was my food for the week! Members of the public would treat me like everyone else when navigating the pavement, which could result in a fall if they bumped into me. This isn’t always practical for me, but then again I would much rather be treated like everyone else. What people don’t often realize is that I can be very unsteady on my cane; one small knock and that’s me on the floor! If I am using my cane in public people may question my use of a blue disability badge, not necessarily verbally, but I see the odd looks  in my direction. Yet using a blue badge on a good day means I may be saved from a very painful tomorrow; well, that is the aim.

On the other hand, if I am using my wheelchair it can be a very different story! It is extremely common for people to talk to the person I am with rather than talking to me. “Hello… I’m down here!” which makes me question why. Some may argue that this is due to people not knowing how to respond to someone in a wheelchair, or being worried they would say the wrong thing and offend me. Yet I can assure you I will not be offended to be asked to pay for my weekly shopping! I am completely capable of talking and communicating with you — just talk to me like you would talk to any other person.

Also, when using my wheelchair in public, people often cannot move out of the way quick enough, sometimes moving half a meter away from me. Not only that, people start moving other people out of the way, getting them to completely part the traffic in an attempt to stop me from running them over! Don’t get me wrong, this is a very nice gesture and certainly helps when getting where I need to be. It’s just the complete opposite of using my cane, and it can be amusing to see the looks of panic as people get closer to my chair.

In my local supermarket the sign on the disabled toilet has recently been changed to be more inclusive, making an extremely valid point. It is vital to understand that things like chronic pain are invisible to others, but that does not mean individuals do not need to use an accessible toilet. I feel this can go hand in hand with people who are part-time wheelchair users. Not every disability is visible, and not every disability requires the same mobility aids, changing depending on how the individual is feeling at that exact time. Wheelchair or cane, I am still me. I can talk to you when I am in a wheelchair and I will not run over your foot (well I will try my hardest not to!) as you walk past me.

The final observation I have found when using a wheelchair part-time is something I call “the nod.” Now “the nod” is something that is hard to describe if you don’t use a wheelchair, but it only happens when you go past another person in a wheelchair. Both people in passing (myself and the other wheelchair user) simply nod at each other and smile. I know this sounds simple and it could happen between any two people when passing on the street, yet when I was in France the only nod I got was from another wheelchair user. So why does “the nod” occur? This is hard to say for certain, yet it seems to be some kind of mutual respect, maybe “I know what it’s like” kind of respect. However, when I’ve attempted “the nod” to a fellow wheelchair user while using a cane, it hasn’t had the same effect, so maybe it’s a wheelchair thing.

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How 'Speechless' Is Breaking New Ground in TV Disability Representation

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A month ago, I spent four-and-a-half hours on a gray couch in the Changing The Face of Beauty studio to film an interview for their new #FaceMyBeauty Couch series.  As I wore a blue button down shirt, khaki pants, and a blue blazer, I was grateful for the opportunity to be part of this new Couch video series.  This new platform gives me, and others in the disability community, a place to talk about the need for our representation in advertising and in the media in general.

In the opening scene of this video, I talked about how the lack of inclusion in media matters to me because there isn’t understanding in the general public of the disability community.  As the founder and host of Special Chronicles, a media platform that gives respect and voice to people with special needs, I am passionate about telling the stories of those of us with disability. This lack of understanding in the media towards those of us with disabilities means that viewers don’t see us. By us not being seen, the mainstream community cannot understand or accept us.

This is a time to celebrate the acceptance and inclusion in the media of those of us with disabilities. It is time to showcase the lives of those with disabilities on media platforms. In the media, whether on film, television, radio, or podcast, those of us with disabilities are rarely seen, and if we are, we are not usually portrayed in a positive light.

Today, however, the inclusion of people with disabilities in the media is beginning to change for the better. The general public is beginning to see the joy and the whole gamut of human experience on the faces of those with disabilities.

A Palos Park-based nonprofit, Changing The Face of Beauty, is the driving force behind the #FaceMyBeauty Couch series.  Each month of this year they are giving individuals in the disability community the opportunity to sit on their couch and talk about how the media and advertising worlds can change the face of beauty.

The Couch Series has as its mission to include people with disabilities in advertising and, more generally, in the media. Another enterprise, the ABC sitcom “Speechless,” has as its mission to include the disability community in entertainment television.

The television show Speechless is breaking new ground as being one of the first sitcoms to feature a character and actor diagnosed with cerebral palsy.  The show centers around the daily life of the DiMeo family, including Maya (Minnie Driver) and Jimmy (John Ross Bowie) and their three children: JJ (Micah Fowler), Ray (Mason Cook), and Dylan (Kyla Kenedy)— and JJ’s aide Kenneth (Cedric Yarbrough). The character of JJ DiMeo was diagnosed with cerebral palsy and is also nonverbal. JJ communicates with a letter board and has someone else speak for him.

The actor Micah Fowler on the other hand, who plays JJ quite excellently, was diagnosed with cerebral palsy and is verbal. Even though it takes Micah a while to speak, he is still able to communicate for himself. Micah when acting has to use a lot of facial cues and body language to play the character of JJ. I believe Micah should be recognized for the outstanding work he is doing as an actor.

This show is not meant to be an “after school special” but rather a funny and honest television sitcom show.  Micah Fowler’s family, and others in the disability community, do consult on the television show to make sure that there is a realistic portrayal of disability.  In many of the episodes, it takes on disability issues but does so in a light, comedic tone.

Many in the disability community can laugh at scenes on “Speechless” while also finding the show autobiographical to their own life. One viewer I spoke to explained that when she talks with her friends, she says this show is “my life in a sitcom.”

“It’s [“Speechless] so crazy that it’s funny,” said Sarah Kate Sligh, an eighth grade student from Alabama who was diagnosed with cerebral palsy. “But it’s just realistic. I can relate to it.”

Sarah Kate’s mom, Andi of the blog BringingTheSunshine.com, can relate to the character of Maya DiMeo and her “hate list.” There are certain places where Andi will not go because it may not be disability-friendly.

A few weeks ago, the cast and crew of “Speechless” wrapped filming Season One.  The Season One finale, episode 23, titled “C-A-CAMP”, will air on the ABC network the beginning of May 2017. During the filming of the finale, Kelsey Fowler, the older sister of Micah Fowler, flew from New York City to Los Angeles to be on set for the filming. She documented Micah on her own YouTube Channel Vlog.  Through the many months Micah is filming “Speechless,” he and his sister Kelsey remain really close, despite being across the country from each other.

The Speechless sitcom is an excellent vehicle for more inclusion and accurate inclusion in the mainstream media. Join me by tuning in on Wednesdays at 8:30/7:30c to ABC’s Speechless. Let’s support more inclusion and accurate inclusion in the mainstream media of those of us with disabilities.

This column was originally published in the Bugle Newspapers and on SpecialChronicles.com.

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Voting at an Inaccessible Polling Place as a Woman With a Disability

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I love voting. I know that might sound cheesy, but it’s true. In school and at home, it was always impressed upon me that voting and participating in the democratic process were important. I made sure I was registered to vote the moment I turned 18. I requested an absentee ballot if I was going to be out of town when an election was held. I still remember the first time I was able to participate in a presidential election, and how proud I felt to be able to make my decision in the voting booth.

I never imagined that I would have issues just getting into a polling place to cast my vote.

I’m going to fess up, up front: I was naïve. I’ve voted in school gymnasiums, lodge halls and church community rooms, and they’ve all been large, open spaces that have either been on ground floors or accessible via elevators. I’ve always seen people with various disabilities at the polls right alongside me. Thus, I honestly thought accessibility was a given. Yes, I said I was naïve, didn’t I?

To be fair, that’s how it’s supposed to be: Title II of the Americans with Disabilities Act (ADA) requires polling places to be accessible for voters with disabilities. The Help America Vote Act (HAVA) of 2002 requires each polling station to have at least one accessible voting booth or machine. Many states have additional laws on the books. However, any thoughts I might have had that those laws were being followed universally shattered as I stared down the staircase that prevented me from reaching my polling place in this year’s election.

Earlier this year, we had an election in my state (voting: it’s not just for November!). When I saw that I had been assigned to a new polling place, I was surprised. For many years, I’d voted in a huge, ground-level rec room in a strip mall. The rec room was still being used for elections, and only certain voters had been transferred elsewhere, which was puzzling. However, I still assumed that I’d simply show up, sign in and vote, as I’d always done. And then I arrived at my new polling place and received a very rude awakening.

It was on a quiet residential street. I wasn’t driving, but if I had been, it would have been difficult to find a place to park. It was very poorly marked; there were only two small “vote here” signs hung haphazardly from the trees. I never got to see what the actual polling place looked like, since it was down a cement flight of stairs I could not navigate.

I immediately surveyed the area for the ramp or elevator, because I assumed there had to be one… and I found nothing. My voter information booklet had no information on what to do if one’s polling place was inaccessible. Thus, I waited near the flight of stairs until someone emerged, and asked them if they would be kind enough to get a pollworker for me.

The young pollworker bounded up the stairs and scanned the area, completely ignoring me until I called attention to myself. “Oh, you need help?” When I explained I couldn’t do stairs, he disappeared into the polling place and returned with a form for me to sign. While the form did not ask me to specify my disability, I was required to certify that I was disabled and could not enter the polling area.

The pollworker ran up and down the stairs several more times to get forms and the ballot marker. Since there was no table or booth for me to use, I was forced to crouch awkwardly on the sidewalk, leaning against a low wall, to complete my ballot. The pollworker stood nearby, looking pointedly in the other direction. And while he did not rush me, I couldn’t help but feel as though I needed to fill out my ballot quickly so he could get back downstairs.

I walked away wearing my “I Voted” sticker, but I did not feel exhilarated, as I usually did after voting. Yes, I’d been able to cast my ballot, but it had been inconvenient and awkward for everyone involved. I also found myself seething at the fact that I’d been forced to fill out a form disclosing my status as someone with a disability in order to exercise my Constitutional right to vote at my designated polling place. Maybe it was for statistical purposes, but it still rubbed me the wrong way.

The irony was that I’d probably had an easy time. What if I’d needed one or more of the tools the polls were supposed to have for voters with disabilities? For instance, if I’d needed to use the audio ballot, could they have carried the headphones and the heavy listening device up those stairs? Would that have even been a possibility? What about someone who wasn’t able to fill out the ballot without something solid to lean on, like the little table in the voting booth? If someone could not walk long distances, how would the parking situation – that is, the almost complete lack of nearby parking – have affected them? If someone had wanted to vote from their vehicle, as curbside voting was supposed to have allowed, they would have had to double park. How would that have worked out on such a narrow street? The bottom line was that “curbside voting” did not even remotely equal an accessible polling place.

According to the U.S. Department of Justice’s Disability Rights Section, curbside voting is supposed to be offered only as a last resort: “The only suitable polling site in a precinct might be an inaccessible building. In this rare circumstance, election administrators may provide ‘curbside voting’ to allow persons with disabilities to vote outside the polling place or in their cars.” There were numerous schools, houses of worship, lodge halls, stores, and other apartment buildings within a half mile of my home. Was I really to believe that every single one of those locations was inaccessible? Was it more likely that they’d simply considered the staircase to be inconsequential, since it would only “inconvenience” or exclude a minority of voters?

When I did some research, I learned that even though I’d never before personally encountered an inaccessible polling place, my experience had been the exception, not the norm. I was not able to find stats for the November 2016 election, but according to the U.S. Office of Government Accountability, a survey of polling places found that in 2008, only 27 percent of polling places were fully accessible to individuals with disabilities. Forty-five percent of inaccessible venues offered curbside voting. Even more disheartening: that was an improvement over the percentage of accessible venues in the 2000 election. According to a report from Rutgers University, people with disabilities have lower voting rates, and if more polling places were accessible, there potentially would have been more than three million additional votes in the 2012 election.

In order to report the inaccessible polling place I’d encountered, I called several numbers on the board of elections’ website; I got nothing but voicemail. I sent emails to the county board of elections, which were never answered. I also wrote a postal mail letter to the pertinent office in my state’s government, in which I clearly described the situation and provided photos of the staircase at the polling place. I’ve not received a reply. In addition to the ADA and HAVA, my state has very specific guidelines for the accessibility of polling places, but to date, nobody seems to care that those laws have been ignored.

I’m dreading the next election. If the polling place has not changed, I will be forced to switch to voting by mail. I’m not a fan of this because there’s a larger margin of error: ballots can always get lost en route. In addition, in order to ensure that one’s vote is counted by Election Day, one needs to send in the ballot at least a week beforehand. This gives one less time to research and consider the candidates and issues. Moreover, I shouldn’t have to vote by mail because my county can’t be bothered to comply with federal and state law and ensure that people with disabilities can access the polls.

There are some who will probably tell me that this isn’t a big deal, as long as I still get to vote somehow. They offered curbside voting, so I wasn’t excluded, correct? Yes, it’s better than nothing, but if you honestly feel that having to fill out extra forms and crouching on the sidewalk to vote is not a situation that should be remedied, I invite you to try it yourself and let us know just how much you like it. It’s also unacceptable to the U.S. Department of Justice, which writes, “People with disabilities must have the opportunity to be full participants in an integrated civic event. The ADA requires that public entities ensure that people with disabilities can access and use all of their voting facilities.”

Full participants.

It’s 2017. Accessibility of polling places is a matter of federal law. It shouldn’t be something that’s cast aside if it’s inconvenient or too hard to figure out.

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Thinkstock photo by bizoo_n

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I See You Looking at My Child

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I see you looking at my little girl.

I see you looking at her, and then looking at me as I’m looking at you looking at her.

Then you quickly look away but steal another look at her.

And at me.

What do you see when you look at her?

Do you see a child who is lying on her back trying to play with toys?

A little girl who is being fed custard that’s going all over her face and clothes?

A child who’s being carried around while we wait for the wheelchair referral for a specialized buggy.

You may be thinking, “I wonder why her mum doesn’t help her sit up.”

“How can she let her make such a mess? Why doesn’t she wipe her face?”

“Why is she eating custard and not a proper meal?”

“Why is she being carried around? I wonder why she isn’t walking.”

“Poor girl. Poor family.”

Look a bit closer.

What do you really see?

I’ll tell you what I see.

A child who has had to learn the hard way, learn to let all the other kids push past her, knock into her, step on her fingers.

A child whose neural pathways are carrying scrambled messages from her brain to her arms, hands and legs.

A child who has tolerated nearly a year of feeding therapy. She eats orally even though the muscles in her mouth don’t work properly.

A child who is carried even though she wants to be off, exploring the world like her twin.

I don’t mind you looking.

I don’t mind you staring.

I don’t mind you nudging your mate and talking.

I don’t even mind what you are thinking.

I did mind, for a long time, and it did me no good.

I have now reached a place where I can happily look at you looking at my daughter, and look you in the eye, and smile.

Because she’s mine.

She’s all mine. I get to take her home and watch her grow, develop and flourish.

It’s hard not to look, it’s hard not to judge, and it’s hard not to wonder.

But it is easy to show empathy and compassion.

If you are curious – talk to me!

If you are offended – don’t look!

You make me feel empowered.

I simply feel proud.

Proud to know the real story and the real girl and be a part of her journey.

I am also aware that for every insensitive and unkind person, there are dozens who are genuinely interested, impressed, endeared and enamored.

Those who can see through the physical restrictions, the specialist equipment, the constant therapy appointments and delayed speech, and see the amazing little girl underneath.

On the days I strike up conversations with these people, it really makes my day.

I take comfort in the fact that we have made a tiny yet significant impact on their lives.

I wish more people could be more accepting of the multi-dimensional world around them.

These days it seems it is more socially acceptable to be cold, quiet and vapid than to be sensitive, open and amicable.

So, next time you steal a look at her, then back at me, and then sheepishly look away, perhaps go home and look in the mirror.

What do you see?

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Being 'Differently Abled' in an Exercise-Obsessed Society

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It never used to be this way… where there’s a gym on practically every corner, you have at least one friend who is a trainer/pusher of the latest workout fad and weight loss shake, selfies look a lot like bragging about a person’s strength/endurance/accomplishment in the physical arena, and “girl’s night” includes a sweat session at the newest gym. I’m no stranger to participating in that world… I was that person up until two years ago when my health took a hit like a punch from Rocky. And down I went.

See, I was working out before workout wear became everyday wear. I sported old T-shirts and unflattering boxy shorts to the gym years before the modern day wardrobe, which now has more spandex than denim. I was doing leg lifts to Jane Fonda’s VHS alongside my mom in the 80s and took the only three classes offered at the gym (unlike today, where there is a different class offering for every hour). I wore tennis shoes during the era where there were maybe four choices and not a shoe for every sport in every color by every brand. I was a work out queen. Which makes it all the more difficult to exist now in the world where my body seems to rebelling from what I put it through all those years. In fact, it seems to be digging its heels in the ground and refusing to do the everyday essentials, like walking with ease. The doctors always say the reason I’m having such a hard time coming to terms with my new reality is because I was an extremely active person. I strained my body, pushed it, forced it… just one more rep, one more lap, one more class. I was an athlete, and my body was a tool.

So what’s a person to do when their once able body decides it’s not as able? Where do I fit in and how do I honor the athlete that once was? How do us “differently abled” individuals, due to chronic pain, fatigue, illness or circumstances, fit in a society that glorifies and bombards us with images of being nothing less than active?

We need to adjust. My workouts now include exercises geared to someone 40 years older than me. Sit-and-Be-Fit style, uber low impact, no coordinating outfit needed. I do not break a sweat. The gentle encouragement coming from the DVD to “take it easy” and “rest if you need to” and modified options on top of the modified option is a far far cry from the drill sergeant commands I’m used to following.

Aqua aerobics find me in the company of women many years my senior, and what a lovely bunch they are! Although I feel like my physical aging has been accelerated due to this illness and I’m joining a group I have not had the privilege to chronologically arrive at yet, I get them! I feel like an 80-year-old lady in a 40-year-old body. I’m am seeing what the future holds for my peers… now. They will one day realize the importance of balance, the way the mind can fail you in conversation, and strength that will be essential for simple things like getting off of the toilet. Truth! Just to name a few.

During this process of losing my physical abilities, I’m having to strengthen my mental abilities. There aren’t any celebrity endorsements behind that, no models airbrushed across magazine covers on the newsstand to celebrate that, or medals given out to show the world I showed up. Despite all the struggle… I am here, doing things that take great strength, endurance, and good old fashioned grit! Let me tell you, or… perhaps you already know… that kind of performance, that kind of perseverance, is so hard to go through.

When the physical part of you won’t respond to the mental commands you send it, you need to up the demands of the mental part of you for greater mental output. In other words… the new muscle that needs to be strengthened and flexed is the one that will assist you in your new reality. Your mindset.

Athlete: “a person who is trained or skilled in exercises, sports, or games requiring physical strength, agility, or stamina” — Webster Dictionary.

Do you hear that? A faint sound of “Chariots of Fire” plays in my head as I slowly climb my stairs, wall walk my way through the house, and sit through situations where there is stimuli overload. My sideline spectators are my family of five, who are silently holding up their signs of support, encouraging me to do more, try harder, stick with it. My well earned “medals” are the arms that circle my neck at night with hugs for another day I’ve managed to do this despite the fight my body is putting me through. You know what? I think I hear it for you too!

From one differently abled athlete to another, I celebrate you! Perhaps we can meet up at PT class in our sensible shoes and share our daily victories… because they matter, you are stronger for them, you have the heart of a champion!

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I'm No Saint for Adopting a Child With Disabilities

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“Wait, you mean you knew? And you still went through with it?”

I shifted uncomfortably in front of this new friend. “Well, wouldn’t you still ‘go through with it’ if it were your daughter?”

The woman just stared at me, mouth slightly open.

Wait for it, I told myself. Here it comes…

She took a deep breath and delivered, like a hundred others have in the last nine months: “You and your husband are just saints!”

The woman’s second question referred to our adoption of Guyana, a 5-year-old beauty from Armenia. Guyana was born with spina bifida, hydrocephalus and congenital scoliosis, along with a few other surprises (like her body creates almost no growth hormones, meaning at nearly 6 years old she is the same size her sturdy brothers were at 15 months). She can’t stand or walk and requires full-time medical care.

Nick and I are young, educated, middle-class, well-traveled and have a lot of opportunities ahead of us. As an Air Force family, we rarely live around family, move a lot and occasionally deal with months-long deployments and more frequent trips where Nick is gone for weeks. We both enjoy long-distance racing and being very active (Nick dreams of competing in American Ninja Warrior someday!). Furthermore, the adoption emptied our savings and then some. Not to mention we were already pretty dang busy with our three small children ages 3 to 8 before adding our new chatterbox to the mix, fully aware of her many physical conditions and the lifetime commitment they might entail.

These facts added together mean we get a lot of flat-out disbelief and undeserved adulation when people hear our story. People just can’t get over that we actively chose and paid for this life. I should be used to it by now; I watched my own parents receive praises upon praises when they adopted my sisters.

But I’m not. And here’s why.

Let’s start with the obvious: Nick and I are human with plenty of flaws. We fight over how to discipline the kids. We sometimes yell when we lose our tempers. We forget to obtain a referral from our insurance before taking Guyana to a specialist. Her cuteness doesn’t always compensate for our impatience. We don’t speak Armenian, had never adopted before and really were/are spina bifida rookies.

But beyond that, we were terrified — at multiple points — to adopt Guyana.

From the beginning, Nick and I both knew deep within our souls that, just as we were made for each other, Guyana was supposed to be in our family. But that doesn’t mean it all came easy.

So yeah, we have felt the fear, not of being unprepared (because every parent both biological and adoptive is!) or of what Guyana’s medical conditions may bring but because we were afraid we weren’t good enough for her.

mom holding smiling daughter

The truth is that we are screwed-up, messed-up, flawed bits of beautiful humanity. All of us are. Nick and I just happened to say yes while feeling every ounce of fear possible. We kept moving forward, kept trying, kept learning, kept improving because we knew caving in and hiding would haunt us far more than any other mistake we could have made with Guyana.

And everyone who has told us we’re saints — that they could never do what we did — could do the same. Because when people put us on a pedestal for adopting a child with disabilities, they really are giving themselves a pass. In essence, they are excusing themselves from taking the hard route: “Well, only saints like Nick and Crystal adopt, and since I’m no saint, I guess that means I don’t have to/can’t!”

And therein lies the worst rub: by calling us saints, people are actually slamming the doors on their own potential — and any child who could one day bless them more than they ever thought possible.

mom holding daughter smiling

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