How the Disability Community Is Like an Island

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It’s finals time at school. I’ve been studying really hard for all of my exams, especially Science. In Science, we have to take a Regents exam, which was made by the state. They’re a lot harder than regular district finals. One of the things we have to study are the state labs we’ve done. State labs are basically experiments that the state requires you to do.

The most recent was about evolution. It was simulating finches with different beaks, living on different islands, trying to get enough food to survive. We learned before this that the theory of evolution was brought about when Charles Darwin visited the Galapagos Islands and studied the finches that lived there. They all used to live on one island, but then all migrated to different islands. These islands all had different features, and the finches and their beaks became adapted to these environments, until they weren’t all one species anymore. Something similar has started to happen to humans. And no, I’m not talking about skin color.

All humans started on the same island, the mainland. Some migrated to different islands. Right now, we’ll talk about the disability community, so let’s call this island Disability Island. Disability Island has different, and sometimes less, resources than the mainland. Some people on Disability Island need resources from the mainland, so the people on the mainland will ship some over to Disability Island. Some people on the mainland are upset that they have to give some of their resources to people on Disability Island, saying they should just work harder.

Eventually, the people on Disability Island start “evolving.” They talk about different things, they watch different shows, listen to different music, and even start creating their own language (spoonie, gaslighting, ableism, etc.). This isn’t exactly bad though. They lean on each other for support, because these people live on the same island, with similar resources, similar lives, and similar experiences.

But the more they evolve, the more different they become from those on the mainland. And the more different they become, the less people on the mainland want to try to understand them. This isn’t at the fault of the people on Disability Island; evolution is involuntary. Yet the people on the mainland don’t care. All they care about is staying on their own island. Does this sound familiar? This is one way communities, and more importantly, cultures are formed.

So what can we learn from this? Well, I’d love to write something that sounds wise, like something you’d find inside a greeting card, but I gotta be honest with you all: I have no idea. It brings up a lot of questions, and the answers aren’t so black-and-white. For example, is this kind of evolution good or bad? It depends.

The people on the mainland like being with those like themselves, and the people on Disability Island take comfort in each others’ presence. But in the grand scheme of things, these two kinds of people are being pulled apart by their differences. Both groups of people are scared to visit the others’ island because the people on the other island seem so different.

Another tough question: if we stay on our own islands and continue to evolve, will we all become “different species?” Meaning will we all eventually become so different that we have nothing in common? There’s probably no way to know until the future. So for now, don’t be afraid to visit other islands. You never know what you’ll find there.

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Thinkstock image by TongRo Images.

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Why Disability Parking Spaces Are a Matter of Equity

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Last year, my husband and I went to Italy for a wonderful family reunion. It was great to see family and friends after so many years. Much as I enjoyed the trip and was focused on family, being Italian-American with a disability, I have always had an abiding interest in cross-cultural views of disability. I’m not a wheelchair user, but signage regarding wheelchair access is probably the easiest thing to find in any country and can give clues as to a country’s take on disability in general.

In the small, southern medieval town of Agropoli, I found a parking space marked with the universal wheelchair symbol in the familiar blue. But something was different from what we see here in the States. Under the wheelchair symbol in yellow was an additional sign asking “Want my space? Get my disability! Social Awareness Campaign, Department of
Social Solidarity.” A little blunt maybe, but it sent a message. I was first and foremost gratified to see that it was spelled out that a person’s right to the space was supported by an official entity. Too often I think we forget that a person’s right to a disabled parking space is the result of hard fought legal issues and not a question of convenience or luxury. Hence why people may try to take the space “just for a quick trip” without thought to whether or not they have that right. So the endorsement lends a certain validity that I don’t think is appreciated fully in many countries. The second sign makes the issue a matter of equity among citizens.

I don’t have mobility issues of any kind to prevent me from going about my daily routine unassisted, and I admit I have been envious of those spaces. Anyone who lives in Los Angeles knows that life revolves around driving, and parking is everyone’s worst nightmare, next to gridlock. I have circled
parking lots and eyeballed empty accessible parking spaces for what felt like the millionth time, barely admitting to myself I wished I could legitimately sneak my car into the space and get on with my needed errand.

But I haven’t, for a couple of reasons — my mom and my dad. Both of them acquired age-related disabilities. My father acquired cardiovascular disease, which among other things caused him to need to use the accessible parking spaces first so he wouldn’t have quite so far to walk and could save his energy and risk of falling. Later, towards the end of his life, he needed the parking so he could get in and out of his wheelchair comfortably — a necessity if he wanted to go out at all.

My mom could use the spaces. She still drives, but persistent vertigo and mobility issues make her at risk for falling and fatigue. She tells me she refuses to use the disabled parking spaces though — and she told me why. Though one day she may absolutely need those spaces, as long as possible she wants to keep them open for people she feels need them more. That’s her choice. That’s her vision of equity for all.

She also told me this story. When my father was ill and unsteady on his feet and in possession of a disabled parking placard, but still mobile enough to not need a wheelchair, they went out to do the grocery shopping — an errand he enjoyed. They attempted to find a disabled parking space so my father would not have to walk far. They found one almost directly in front of their store, but it was occupied. Inside the car devoid of any disabled placards was a young man chatting on a cell phone. My mom did not stop, but continued circling and found another spot farther away from their store.

As my mom helped my dad walk across the lot, they passed by the same car with the young man still chatting away. My mom, an immigrant and second language speaker, did something she usually tries to avoid — she confronted the young man. “Why you parked here? My husband needs this spot because he cannot walk well.” The young man startled at my mom’s disapproving tone and glanced at my dad just behind her holding his
walker for support, fatigue and discomfort already lining his face. He dropped his phone, faced flushed. “Oh I’m sorry, I’m sorry,” he mumbled as he clumsily placed his car in reverse and left the parking lot.

If you are able-bodied, please consider the equity those spaces are designed to provide. Don’t look to an official injunction from a government entity to tell you if you merit the spot. Don’t wait for a stranger to tell you that you don’t. If you are unsteady on your feet or a wheelchair user and need those spots to live your life, use them as you see fit — it is your right. Share your need for those spaces when you have a chance. Personalizing the access those spaces provide makes able-bodied people less likely to use them indiscriminately.

If you need the space, use it. If you don’t, leave it. Everyone will have a better day because of your actions.

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Morgan's Inspiration Island Is the World's First Accessible Water Park

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Opening June 17, Morgan’s Inspiration Island is an “ultra-accessible” water park in San Antonio, Texas.

Read the full version of Morgan’s Inspiration Island Is the World’s First Accessible Water Park.

Read the full transcript:

Everyone Is Welcome at the World’s First Accessible Water Park.

Opening June 17, Morgan’s Inspiration Island is an “ultra-accessible” water park in San Antonio, texas.

The attraction is the sister park to Morgan’s Wonderland — the first fully-accessible theme park.

“Morgan’s Inspiration Island promises to give individuals with physical or cognitive special needs a place where they can splash and play without barriers.” – Gordon Hartman, Founder of the Gordon Hartman Family Foundation

The park features a river boat adventure ride, an eight-acre catch and release fishing lake and five tropical-themed water play areas.

“Like Morgan’s Wonderland, Morgan’s Inspiration Island is not a special-needs park; it’s a park of inclusion.”

There are three models of waterproof wheelchairs at the park,

Including a waterproof powerchair powered by compressed air.

Those with a disability visiting the park can enter free of charge.

After its June 17 launch, the park will be open every day until mid-August, switching to weekends-only for the remainder of the month through September.

To buy tickets or learn more, visit morganswonderland.com.

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How Bipartisanship Can Increase Employment Opportunities for People With Disabilities

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Yesterday’s shooting outside of Washington, D.C., reminds us about the dangers inherent in bitter partisanship and political uncertainty. As pollster Frank Luntz said, “If there ever was a chance for Republicans and Democrats to stand up and say, ‘Stop,’ this is it.” This master communicator reminds us that “we all believe in the Constitution, we all believe in the principles of life, liberty and the pursuit of happiness.”

Among those principles is the idea that anyone who works hard should be able to get ahead in life. People with disabilities deserve the opportunity to earn an income and achieve independence, just like anyone else. Despite the fact that job openings just hit a record high, only one in three people with disabilities have jobs. For a nation with more than 6.4 million openings, we cannot afford to ignore the talents of 22 million working age people with disabilities.

Lost in the headlines was a White House announcement about apprenticeships. This is great news for many, but what about students with disabilities? What chance do they have to access work-based learning or gain the skills employers need?

Did you know that each year more than 100,000 students with disabilities leave America’s high schools without completing their degree?

Annually 60,000 students with disabilities drop out of high school, 37,000 receive a certificate, and 4,525 age out with nothing to show for it. When the school bus stops coming, youth with disabilities and their families face serious challenges.

But what if there was a solution for these young people? What if students could choose the chance to build real world skills and develop their resume before the school bus stops coming? As our nation’s labor policy focuses on expanding work-based learning, it is critical that students with disabilities be given the same opportunity.

The overwhelming majority of people with disabilities want to work and value independence over government benefits.

What if students with disabilities had the chance to do an apprenticeship?

The need for more “career pathways, apprenticeships, on-the-job training and incumbent worker training” are among the defining challenges facing our nation’s workforce system. The German model of apprenticeship answers those challenges by combining classroom training with skill development. Similar models are achieving incredible successes among young people with serious disability issues.

As our nation expands apprenticeship opportunities, it is important to look at how youth with serious disabilities are being empowered into the workforce. There already are two models that are achieving extraordinary success with work based learning opportunities: Project SEARCH and Bridges from School to Work. SEARCH is a unique, employer driven transition program that prepares students with disabilities for employment success. Likewise, the Bridges offers assessments, workshops and job matching. This model has grown to more than 300 programs in 46 states and served nearly 3,000 youth in 2015. Among those young people, more than 78 percent found jobs. These are transformative results for a population that faces serious barriers to pursuing life and liberty.

If we want students with disabilities to succeed, they need to be prepared for growing sectors of the economy. As Baby Boomers age, nursing homes, hospitals and other employers are expected to have 1.3 million job openings by 2020. We know that employees with disabilities can succeed in these fields and we believe youth with disabilities can be an ideal solution for these employers. Youth will only be able to succeed if they get skill training and prepare for the world of work.

Success for students with disabilities can be a win-win for both employers and taxpayers. The American taxpayer can save up to $300,000 dollars per SSDI beneficiary who goes to workforce instead of going on benefits. To put that in practical terms, consider the potential taxpayer savings over the lifetime of a student with disabilities entering the workforce. Even if only 70 percent of the 4,525 students who age out of school each year found a job, that could represent more than $945,000,000 dollars in savings.

In these dark times, it may seem odd to look at workforce as a rallying cry for unity. However, Congress itself has turned to economic issues before to find consensus. In 2014, a bipartisan, bicameral consensus emerged around the Workforce Innovation and Opportunity Act (WIOA). It’s not often that you see Senators Patty Murray (D-WA), Johnny Isakson (R-GA), Tom Harkin (D-IA), and Lamar Alexander (R-TN), as well as John Kline (R-MN), Virginia Foxx (R-NC), George Miller (D-CA) and others voting the same way.

As many hope to pull back from the brink, let’s talk about how we can get more people back to work. Let’s talk about how to channel the talents of young people with disabilities into the workforce. Above all, let’s all get to work.

Learn more at RespectAbility.

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Being Disabled Is a Job

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I’ve heard some say disability benefits are unnecessary hand-outs for people who should just die off, and why should hard-working people foot the bill for people who are lazy, whose lives mean nothing?

The disability process itself mirrors these same sentiments – the three  to five years (average) process for applying, fighting for, and receiving disability in the USA is by its nature a grueling process, with analysts hired to deny applicants not once, but twice (standard procedure), forcing the applicant to appeal their case twice over several months before a hearing is granted, which then takes years to schedule due to a shortage of judges. It is a process intended to force people to give up.

You usually have to be literally dying to be automatically granted disability in the USA.

Disability benefits are actually a paycheck for so many people whose lives revolve around the more-than-full-time job of survival against all odds: navigating access to doctors and treatments on top of physically getting through each day and finding a way to achieve an acceptable quality of life. It’s difficult to understand unless you take the time to learn how hard many people with disabilities work.

On top of managing their own healthcare and lives, many people who receive disability benefits are working to reduce the number of people who will need disability in the future by influencing research, treatments and even cures.

Here are some contributions disabled people make daily (individualized):

  • A person who shares their story on behalf of millions of others with their condition makes a substantial difference in people’s lives who feel profoundly alone and unheard, whether through legislative advocacy, fundraising, community events, or with doctor groups.
  • A patient who spends 20-40+ hours per week doing health-related activities (doctor appointments, picking up/sorting/administering medications and treatments, movement/physical therapy/exercise, disputing claims/denials and handling bills, contacting pharmacies and insurance companies) is educating their providers, insurance representatives, and even elected representatives that patients are real, complex, and diverse, and rely on well-researched care and quality access to providers and treatment.
  • A person who draws their blood daily for research to find what causes their rare disease, even though they are on the brink of death every day and cannot afford to lose more blood, is literally putting their life on the line so that future lives will be saved.
  • A patient who leads a support group for people with rare or severe chronic disease is a mentor for both veteran and newly-diagnosed patients who have never met anyone with their condition and who need someone to hold their hand. Patient-led support groups are vital where professionals are not able to connect with the patient experience in the same way.
  • A person who begins a blog about their journey with disability or disease becomes an automatic educational and emotional resource – and mentor. A story on paper becomes an archive of experiences that others can learn from or relate to indefinitely.
  • A patient whose life is centered around a narrative of invisible pain, disease progression, healthcare, mobility device usage (or not), will always be a spokesperson for their disease or condition without ever asking for it. They often learn how to ask questions, dig deep, educate their friends and family, and see right through fake promises or cures from years of practice – and they can’t ever quit this work. Without collective knowledge from millions of patients pooling their self-advocacy together, each newly diagnosed patient for any disease or condition would have to rewrite the handbook.
  • A person who uses all their energy to survive just one more day is fighting with all they have. They know what it means to dig deep and find answers when it seems there are none, and handle pain where an able-bodied person couldn’t. We can all learn from this resolve to survive.

Professional patients do not get paid, but their work is still work, with no time off. Believe me, if there were paid positions for disabled people doing a kicka$$ job of surviving and taking care of themselves, they would have already applied en masse.

For people who struggle every day to get out of bed (or not), manage their health, share an educational post online, and keep a roof over their heads; their most important job is life or death, not paycheck vs poverty.  However, many patients in these situations are fighting both for their life and struggling financially. They exist in a life or death and “paycheck” vs. poverty continuum (now’s a good time to share that people living with a disability are twice as likely to live in poverty than people not living with a disability).

If disability benefits could be seen as a paycheck for people who do not fit the current definition of work, whose unchosen work is vitally important to future generations, where could that lead us?

If we recognized, through faster and more generous disability approvals, that disabled bodies and minds are also capable bodies and minds that do unattractive essential work that helps glue society together (i.e. we need both garbage workers and presidents), where could that lead us?

If the goals are to reduce stigma, deaths (including by suicide), and improve the quality of life for people with disabilities as well the lives of their caretakers, doctors, communities, and the world, where could living wages for disabled people lead us?

This is not a request to recognize lesser-than achievements or abilities in an inspirational way. It’s a shift in thinking towards recognizing that people can do amazing things whether they are fighting a degenerative chronic disease, making $100k per year, or both.  It’s a shift to recognizing that working for pay vs. fighting to survive should not be seen as greater vs. worse, lucky vs. unlucky, happy vs. sad – it shouldn’t be “vs.” anything!

If someone works 10 times harder than another just to brush their teeth, work five or 10 hours per week (or make it through all their doctor appointments), manage their health, or go to bed, these must be recognized not as inspiration porn but as equally valid successes. It shouldn’t matter that some are working hard to fight an incurable disease 24/7 while others may be leading a company with perfect health – they’re both using the same kind of cells in their body and brain to be successful within their realm of ability.

We all have limits; we just need to stop defining those limitations based solely on the experience of able-bodied people.

If we continue to define success using able-bodied norms (and the size of people’s bank accounts), we support assumptions that “significant physical or mental hurdles” and “amazing contributions to society” can’t exist in the same sentence.

We, the disabled, don’t want pity. We don’t want to be inspiring. We want to be seen and recognized equally. We want to be acknowledged financially for the contributions we make to society that are equally as valid as able-bodied people. Because many of us are working harder than a majority of the population to achieve anything at all.

Oh, and the disability benefits? They’re not icing on the cake. They’re essential to our survival.

*I speak only from my own experience. My story and my words do not represent all people living with disabilities. Our lives and our stories are as varied as the cells in our bodies.*

Follow this journey on Being Charis.

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Thinkstock photo by MagMos.

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My First Father-Daughter Dance With My Daughter With a Disability

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This past weekend was my daughter Namine’s dance recital. I was up on stage with her in the father-daughter dance, and I absolutely loved it. I quickly realized that mine was not the only attitude, however.

I was surprised to discover that not all the fathers involved felt the way I did. Some seemed to view it as tedium; something they had to do for one reason or another. I myself loved every bit of it — even the practices — but the most animated response I ever saw was a dad saying, “That wasn’t too bad.”

Coming out of the finale after Sunday’s recital, I, like many other dads, had taken off my golden crown and cape. I folded the cape and put it into my pocket — I was wearing cargo shorts, so plenty of room there — and held onto the crown. Another dad passed me in the hallway, and hardly looking at all, tossed his costume pieces in a garbage can.

I was aghast. Not that I ever plan to use the costume again (although Namine already has plans for the golden cape), but I would never have thrown it away. I suppose it’s just my sentimentality, but to me objects hold memories. And not only that, this was my first father-daughter dance with Namine. There will be more, of that I’m sure, but this first will always be special to me.

When seeing the nonchalant attitude some of these fathers took with regard to the dance, I could only think of the life we’ve had to get to this point.

Namine’s infancy was difficult — terrifying, even. She almost died. She needed surgery after surgery after surgery. Doctors warned caution, because she might not live very long — and they had good reason to worry. Complications can arise after even one surgery — and Namine had three on her heart alone.

I want to cherish every moment with Namine because even though she’s healthy and active, I don’t know what the future might bring. I’m not afraid for her; I just want her to know I love her. I don’t want to just go through the motions, just say the words. I want to banish all doubt from her mind, and prove to her in everything I do that I love her. Even if it means wearing a silly crown and cape for her — or maybe especially if it means wearing a cape for her — I will do it gladly because I love my daughter, my Namine.

Follow this journey on Eiche Fam.

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