split screen of pokemon go from a wheelchair

Playing Pokemon Go as Someone With a Physical Disability

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Pokemon Go is a new game that came out this past week and has already become a sensation with 15 million downloads already. The game encourages players to get out, get up, and get moving. The more a player walks around, the more gear they get, Pokemon they catch, the faster they level up, and the faster their “eggs” (containing rarer Pokemon and gear) hatch.

split screen of pokemon go from a wheelchair

I didn’t play Pokemon as a kid, but I downloaded the game when my friends started raving about it. I quickly realized there would be problems once I began to play: it was designed for people without physical disabilities.

The first night I played the game I limped to the park with my friends to catch Pokemon. Due to postural orthostatic tachycardia syndrome (POTS), one of the conditions I have, I had trouble catching Pokemon. At least for a beginner, the game required standing still in place to catch Pokèmon. I can’t stand still for long or else I faint, but sitting down and standing up over and over again wasn’t an option either. I quickly began feeling badly as my friends bounced around easily succeeding at the game.

The second day I played Pokemon Go I ran into another problem: the game requires a lot of walking. I have Ehlers-Danlos syndrome (EDS), so walking a lot often means popping out or dislocating joints or walking on recently dislocated joints. The game is fun for sure, but little is worth that level of pain. I began to play a lot less while my friends went on multiple walks a day and left me behind in the game.

Wanting to play and frustrated by falling behind, I tried using my wheelchair. I thought surely it will fix both my problems (standing and walking). However, playing in a wheelchair offered its own struggles. I couldn’t wheel and catch Pokemon or go to PokeStops the way my friends who could walk did so. I also couldn’t get to all the things I needed to in grassy areas or up steps. My friends offered to take my phone to these areas, but I wanted to play, not watch them play for me.

It makes sense why they released the game in the summer, but it has raised another problem for people like me. I cannot play most of the hours others can. Even in a wheelchair, I cannot go outside in the summer heat without fainting or severe symptoms, so I have to wait until dark when it cools off to play. When everyone around me is playing, at least during their lunch break, it just leaves me even farther behind.

I haven’t stopped playing Pokèmon Go and will probably continue to play. It is an enjoyable game and is doing great things for the average person who needs more exercise. However, the game definitely feels like it was made without people with physical disabilities in mind. Being left behind by my friends in the game is frustrating and will continue being so because the playing field is not even close to level. No matter how great I am at catching Pokemon, I can never catch up. It is so frustrating to always be behind for reasons I can’t control.

One of the worst parts is the able-bodied people attempting to tell me I should be able to play with no problems. Many convince themselves the game is fair and that a wheelchair or physical disability should not change game-play.

People with physical disabilities are telling a different story. People are feeling left behind, no matter the extent of their limitations. I hope the developers of the game listen to those of us who are actually affected and make changes so the game is fairer and more accessible to us all.

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How We Can Change the Grim Employment Outlook for Young Adults With Disabilities

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High school graduation is usually a time to recognize the culmination of a successful four years of hard work. Families, friends, and educators join together to celebrate the graduate with ceremonies and festivities. It is also a time for thinking about a new set of goals. In most cases, these goals are related to the
expectation of attending college, finding a job and living independently.

However, for many students with disabilities and their families, graduation can be a difficult and anxiety-producing time. As the big day approaches, the pressing questions tend to be: What is next after graduation is over? What options are out there for me? Am I going to be able to find a job? Should
I attend a trade school
? Will I someday be able to participate fully in the community as those without disabilities do? Will the workforce welcome me? In too many cases, the answer to these questions is No.

Sadly, this is the situation many people with disabilities and their families face.  The percentage of high school graduates with disabilities who enroll in college and join the work force is dramatically low
compared to their peers. According to the U.S. Bureau of Labor Statistics (July 20, 2015):

“People with a disability are less likely to have completed a bachelor’s degree than people with no disability. Among people age 25 and older in 2014, 16.4 percent of people with a disability had completed at least a bachelor’s degree. By comparison, 34.6 percent of people with no disability had completed at least a bachelor’s degree.”

“People who have completed higher levels of education were more likely to be employed than were those with less education. At all levels of education, however, people with a disability were much less likely to work than were people with no disability. For example, 26.1 percent of people with a disability who had completed at least a bachelor’s degree were employed in 2014; among college graduates with no disability, 75.9 percent were employed.”

A couple of months ago, I was invited to talk to a group of 20 high school students with disabilities. Some of them were seniors who would be graduating in less than three months. When I asked the students what plans they had for after graduation, their reactions were disturbing. Just one planned to enroll in college, and just one planned to apply for a job.

It caused me great sadness to witness this defeatist attitude. I don’t blame the students. Many educators, families, employers, etc., believe those with disabilities shouldn’t be part of mainstream society. Many people with a disability internalize this, lose confidence, withdraw, and, as a result, never end up getting a chance to discover their abilities and use their potential.

This tragic situation calls for relentless and outspoken advocacy efforts, including awareness-raising campaigns at the national level. If we do nothing, we are condemning many young people with disabilities to a “life sentence” of unnecessary dependency, lost opportunity, and worst of all, unrealized dreams.

Families, educators and students must work together to develop an education and employment plan for graduating young adults that will focus on their strengths. Everyone is gifted with a talent, and people with disabilities are no exception. We all deserve the opportunity to develop to our full potential.

Juana Ortiz’s book “I Made It” is available at www.juanamortiz.com and on Amazon.

The Mighty is asking the following: Describe a moment at work that was either incredibly challenging or where you faced adversity. Tell us how you handled it or wish you had handled it. If you are unable to work, tell us one thing you wish others understood about your situation. Check out our Submit a Story page for more about our submission guidelines.

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Why Our Beach Vacation With a Disability Wasn't Fun in the Sun

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How many times have you heard someone say they need a vacation from their vacation? Vacations, planned for relaxation and family adventures, are often more work than we bargain for. This can be even more true when a family member has a disability. Many places that beckon families are woefully inaccessible for someone who uses a wheelchair. Even “the happiest place on earth” was barely capable of accommodating our mobility-impaired teen. It’s a harsh reality that one learns to accept with time, but acceptance doesn’t make vacationing any easier.

At 19, my son can no longer be carried onto the beach and across the sand. And while we have purchased a variety of wheeled carts and have tried various methods such as carrying him onto the sand via hammocks and kayaks, there is no “easy” way to get him across the large expanse of sand. The undertaking requires at least two adults and necessitates that we stay on the beach for most of the day, as going back and forth requires too much energy. It’s just one of those things we have learned to deal with the best we can, including getting him up and down the wooden stairs onto the beach.

This year, however, our efforts to access the shore were thwarted when the state decided to replenish the beach in front of our family vacation home. After many months and many millions of dollars, the shoreline was rejuvenated with hundreds of thousands of cubic yards of new sand, much to the delight of most beach-goers. In addition to luxurious white sand as far as the eye can see, the development of the new beach included the creation of a 14-foot tall dune (which equates to over a story of steeply graded sand.) The dune is part of an effort to fight beach erosion, and while this plan sounds wonderful on paper, nowhere during the multi-million dollar job was any disability access created through the monstrous wall of sand.

So this year, as we made our annual Fourth of July trip to the beach, we launched a heroic effort to get my son over the dune with the rest of the family.  This proved to be an engineering nightmare as the coordination and pure muscle-power required to pull him over the 14-foot-high wall of sand was nothing short of superhuman. One trip to and from the water was enough for us to know that we had reached the point of diminishing returns: the effort was no longer worth the reward. We fought the sand dune, and the sand dune won.

We made the best of things; we took bike rides while pulling him in his adult-size bike trailer and watched the fireworks from the house. We went shopping and ate good beach food. And while other families were relaxing in the sand and playing in the water, we stayed inside. It’s what you do when left with few options.

Under current ADA guidelines, a percentage of beach construction budgets must be spent on accessibility. And while beach re-nourishment is considered construction under these guidelines, we have yet to see the execution of this condition. One would think this requirement would have been implemented during the construction process over a year ago. But it wasn’t. Instead, a big wall of insurmountable sand lies between my son and the ocean.

Our beach access is designated as accessible by the state because of my son, however you’d never know it.  Maybe they are hoping we will be so delighted with the new beach that we will overlook the fact that we can’t enjoy it.  Or maybe what our child needs doesn’t matter at all. One little voice yelling for help is barely audible beneath the cacophony of voices rejoicing in the oasis of pristine sand.

Majority rules, as they say, and this new development is not entirely foreign to us. The fact is, we rarely find natural public areas that have been modified to provide access for mobility-impaired individuals. Over the years we have acquiesced to things like inaccessible school field trips (such as the year my son stayed inside watching a movie about birds while all of the other students went on a nature hike), and parks with only grassy slopes for access. Yet I find it difficult to accept that the basic pleasure of sitting beside the shore at our own beach house has now been rendered next to impossible.  Sure we can get in the car and drive to the accessible beach 20 miles away, and that is likely what will have to happen from now on, even though we have a beautiful beach right in front of our house. Unlike other families, we have no choice in where we go…accessibility decides for us.

So the next time you hear someone complain about how exhausted they are from their vacation, perhaps gently remind them that at the very least, it was a vacation of their own creation, not one imposed on them by the constraints of their physical environment and the powers that be.

The Mighty is asking the following: Describe a moment you were traveling that was either incredibly challenging or where you faced adversity. Tell us how you handled it or wish you had handled it. Check out our Submit a Story page for more about our submission guidelines.

 

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What Laughing With My Nephew Taught Me About Disability and Acceptance

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I spent last weekend with my 3-year-old nephew, Kaine, and it got me thinking about how he sees me. I’m his Auntie Sarah; I use crutches and an electric wheelchair, I wear splints and take tablets, but most of all, I make a huge fuss over him. I buy him toys when he’s already got too many, and tickle him until he can’t giggle any more. I know he loves me as much as I love him, and I’m grateful for all he brings to my life.

KP (my nickname for my little dude) is too young to know anything about my disability, and he certainly doesn’t notice the challenges I face. His naivety is refreshing, and his lack of understanding makes me forget that I’m “different.” He’s very happy sitting on my knee when we go out in my power chair, cranking up the speed and beeping at people as we whizz by. The silliness of it unleashes my inner-child (granted, it doesn’t take much) but laughing with him means I’m just his super-cool aunt who gets around on wheels. He’s also completely amazed at the “robot” in the boot of my car; my wheelchair hoist is an absolute lifesaver, but my nephew thinks it’s one of the most spectacular things he’s ever seen. He always helps with getting my chair in and out of the car, and the most mundane task becomes fun as his little blue eyes light up once it’s in action.

I’m glad my nephew is being brought up around disabled people, though he doesn’t know it yet. There won’t be any awkwardness or uneasiness when he grows up; a wheelchair, any mobility aid or disability shouldn’t phase him as he’s grown up with me and his great-uncle, who had his leg amputated earlier this year. Children are innocent and they adapt quickly. Unlike adults who may feel uncomfortable around disabled people, kids have no preconceptions. They don’t see a disability, or a missing limb, a hearing aid, or a cane; they see a person, and they ask questions.

I find that kids are so blunt, and I appreciate it. “Why are you in a wheelchair?” “Where’s your leg gone?” “Can you walk?” They learn by asking questions and when it’s something unfamiliar, they want to know about it. I often get quizzical looks from young children and I will happily answer any questions they have, but when their parents are embarrassed, apologetic, and pulling them away, that’s where the difficulty lies. There’s no shame in asking; children are curious, so feed their minds and let them be as frank as possible. They learn from the people they’re surrounded by, so if they’re being told “not to stare” by an adult who doesn’t know how to address a disabled person, they’ll grow up with a similar attitude. It’s vital to educate them when they’re young.

I can only speak for myself, but I would gladly talk to anyone about my condition, adult or child. The more openness and awareness, the better. Disability shouldn’t be something that is hidden from children. They’re much more willing to accept it than most adults, and while they’re young, it’s important that they learn as much as they can and have many different experiences. Don’t think you’re protecting them by shying away from topics that you, as an adult, find uncomfortable. Let’s make the next generation as accepting as we can.

Follow this journey on Sarah in Wonderland.

The Mighty is asking the following: How would you describe your disability, disease or mental illness to a child? If you’ve done this before, tell us about that moment and the child’s reaction. Check out our Submit a Story page for more about our submission guidelines.

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Why We Should All Be Upset About a Disabled Teen Being Beaten by TSA

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Last week, a disabled teenager was flying out of Chattanooga, TN. She was partially deaf and blind, and had just completed a treatment session for a brain tumor. When she set off the metal detector, TSA staff separated her from her mother. She became disoriented, was wrestled to the ground and sustained a bloody head injury. TSA also threw the teen in jail overnight, again separating her from her mother.

The young woman who was beaten by the TSA.
The young woman who was beaten by the TSA.

The family is now suing TSA for damages.

It is no secret to many of us that traveling with a disability is hard. From broken equipment to being carried onto planes and being fondled by members of the opposite sex as they transfer you to an aisle chair, flying with a disability involves many indignities. It’s Russian Roulette as to whether you’ll get people who will actually try to understand your needs, or someone who cannot take the time to see that some passengers need special assistance.

For the most part here in Westernized countries, we have legislation that is supposed to protect us from this kind of treatment, and yet it still happens. Some of us still find ourselves being thankful for safe travels, something most able-bodied passengers take for granted. While thankfulness and gratitude are admirable qualities in a person, we shouldn’t be pressured into feeling grateful for having our basic needs met. Human rights should not be based on the “luck of the draw.”

From Rosa Parks to Gandhi, many major civil rights battles have involved transportation. I see no reason why disability rights cannot be the same, if we are bold enough to stand up for our rights instead of assuming that equal access is “too difficult” or just a “nice thing to do.”

If you look at some of the comments following the internet articles about the story, many members of the public seek to blame the mother, or the teenager herself saying “they should have called TSA ahead of time,” or “some people are just looking for anyone to sue.” To me, this again again shows how our society views equal access for those of us with disabilities as “a nice thing to do” rather than a matter of basic and fundamental human rights. Able-bodied passengers don’t have to call TSA ahead of time, so why should we? Why is it automatically assumed that when someone with a disability sues, they are looking for a payout and not for justice? Why is the pressure to “make it work” placed on those of us with disabilities rather than an inflexible system that clearly does not respect the rights of the most vulnerable?

When we act grateful for the experiences of uninhibited traveling when most of the population takes it as a basic human right, disabled people can enable our own oppression. When we have to call the airline, the airport, TSA, and whatever other authoritative body and let them know we are traveling rather than just rolling up to the checkup desk like everyone else, that is not equal access. When people assume that those of us who make use of the laws and regulations designed to protect us are looking for a quick payout, we are living in a profoundly ableist society.

Now is the time to demand better. The legislation designed to protect the rights of disabled people clearly isn’t enough if government employees are beating disabled teenagers and throwing them into jail without their carers. Stop assuming that fundamental human rights are “a nice thing to have.” It only serves to enable those who think our rights don’t matter in the first place.

The Mighty is asking the following: Describe a moment you were traveling that was either incredibly challenging or where you faced adversity. Tell us how you handled it or wish you had handled it. Check out our Submit a Story page for more about our submission guidelines.

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me before you poster

When Someone Told Me I Was Wrong About Suicide and Disability

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Recently I wrote a post on my blog about “Me Before You.” Although the movie has received a lot of negative attention recently, I felt like the topic was more complex than people realized. I was also concerned about the message behind the movie. It essentially says life is not worth living if you have a disability, and I wanted to address something it seemed a lot of people were missing: There are people within the disabled community who struggle with thinking this way. That’s what makes the movie so frightening. It portrays something that is very real.

Soon after my blog post began generating a lot of traffic, someone posted on social media to say I was wrong. They doubted very many in the disabled community ever felt worthless or unlovable, and they thought the movie was just a story about love for people to enjoy without harm.

It’s true – not everyone with a disability has considered ending their life. Not everyone feels negatively about their circumstances. In fact, there are a lot of voices, mine included, who say life with a disability is full and wonderful. Still, disabled or not, everyone has struggled with wondering if their life matters and if anyone will ever love them for who they are. The difference is that when this struggle is put in the context of disability, it’s not as quickly negated. It’s often either ignored because people don’t understand how significant these feelings can be, or society feeds these feelings in the way disability is talked about and perceived.

Quite a few people with a disability have wondered at one point or another if their lives are too challenging for anyone to acknowledge their worth and love them like a real person – not out of obligation or pity, but because of genuine love. The facts in the world around us yell into our lives that those thoughts of worthlessness and never being loved are justified. The fear is not unfounded.

Research has shown that having a disability often leads to being excluded in society.

Children with disabilities have a higher likelihood of being bullied.

The divorce rate for special needs families is up to 90 percent and over 75 percent when a spouse has a chronic illness.

Those with a disability are considerably less likely to get married.

Euthanasia or assisted suicide has been legalized in several countries and in some states within the U.S.; some people believe it could be, and has been, used unethically against people with disabilities.

The suicide rate among people with certain types of disabilities is significantly higher than it is for the general population.

Those who do contemplate suicide are more likely to do so because of the social messages received from society about having a disability.

Movies like “Me Before You” send a message that everyone is better off if people who have a disability do not live. Will, the disabled main character, justifies this by saying to Louisa, the woman he loves: “I don’t want you to be tied to me, to my hospital appointments, to the restrictions on my life. I don’t want you to miss out on all the things someone else could give you. And, selfishly, I don’t want you to look at me one day and feel even the tiniest bit of regret or pity…”

Whether the author realized it or not, she depicted a scary truth. This declaration is not far off from real-life thoughts, and it’s those feelings that cause some people with a disability to no longer desire to live. Not only does this story contribute to the stigma in our culture today against those with a disability, it may be the very thing to cause someone to consider ending their life. This story had a powerful opportunity to change the dialogue on disability. Instead, it contributed to the problem. It’s dangerous for our culture to promote something that indicates ending a life is a viable option when a person feels as if they aren’t worthy of love.

I wish the person who made the social media post was right. But some people do feel this way. And that’s why we need to talk about it. That’s why we need to do something. That’s why we need to work to shift the conversation that takes place within society about disability issues and what it’s like to live with a disability. That’s why we need to keep saying: Your life matters. You are loved. Your presence is significant.

Read the original post on Letting Go of Why.

If you or someone you know needs help, see our suicide prevention resources.
If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255.
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