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.

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Playground 'Fads' Can Be the Social Glue for Kids With Disabilities

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Fidget spinners, Woolworths Marvel Hero discs, loom bands, Pokemon, YuGiOh, Magic cards, the list of fads in the primary school playground goes on. I have memories of similar trends which for my generation included elastics, yo-yos, and sticker collections. These trends were a big part of what my friends and I would share and talk about in my primary school years.

As an educator and Mum, I see the social aspects and social learning opportunities of primary school as one of the key purposes of attending school. Some children find social play relatively easy regardless of the environment and materials at hand. For other children, fads and trends can play a vital role in creating a shared point of interest, which can lead to many opportunities for connection and interaction. For some children with developmental delays or disabilities, participating in typical playground gross motor play such as handball or chasing, may not come as easily. Such play may require additional support from adults in order to be meaningful and successful. Teachers on playground duty are responsible for all children and usually have limited capacity to facilitate social play.

The differences between outdoor spaces found in early childhood education and care settings and primary school playgrounds are particularly striking to me. There are so few resources available to play with when children make the transition to big school. For children who don’t have strengths with initiating social play, there can be big implications for inclusion. Often, early childhood intervention practitioners do lots of vital work around this area, in partnership with all those involved in a child’s transition to help children adjust to this new social context.

I was talking recently with Sarah, a Mum of 7-year-old Jamie who has autism spectrum disorder, who told me, “At my kids’ school, Magic cards were banned because there were cases of children stealing other children’s cards.

For my son, this had been the only social thing he had joined in without teachers’ help and he wasn’t one of the children involved in stealing, so it didn’t seem fair. When this was suddenly removed, I was so worried what the repercussions would be for my child. I felt a need to talk with my child’s teacher about my concerns and I’m glad I did. The school staff were able to help our son connect with other children through a new lunch time card-playing club they set up,” said Sarah, “I don’t think the teacher had originally thought of the side effects of this ban on kids like Jamie, and by nicely talking to her about it, we were able to come up with a solution.”

I have been wondering why there are often negative stories in the mainstream and social media about these types of fads. On social media, I often notice people criticizing the latest trends and commenting on how “children should just be using their imagination” without realizing that not all children play or imagine in the same ways.

At times, schools have trouble managing these sorts of popular interests. In some situations, schools have even banned certain objects from school grounds entirely. Of course, it’s understandable, if there are challenges that arise, these need to be managed in a positive way. However, I don’t feel that blanket bans often go far towards tackling behaviors of concern and can actually accidentally disadvantage and punish the children who may need these activities the most.

Articles criticizing the latest playground trends, don’t seem to recognize the function that objects such as fidget spinners can play in terms of social inclusion, particularly for children with developmental delays or disabilities. There may also be calming sensory benefits of objects such as fidget spinners for some children. I think it’s quite exciting when by chance the latest thing that all the cool kids are into, could also help children with sensory processing issues to self-regulate without requiring a “special,” obvious, “therapy” type object which could make the child stand out as different!

A version of this post appeared on Inclusion Together

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Thinkstock image by ChristiTolbert

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

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Beating the heat this summer just got a bit easier thanks to a Morgan’s Inspiration Island, a new and accessible water park. Opening June 17, Morgan’s Inspiration Island is an “ultra-accessible” water park in San Antonio, Texas.

The family-friendly attraction is the sister park to Morgan’s Wonderland — the first fully-accessible theme park. Like Morgan’s Wonderland, every part of the park is wheelchair accessible and waterproof wristbands with RFID technology are available for parents concerned about getting separated from their children.

“When Morgan’s Wonderland opened in spring 2010, we really didn’t know what to expect, but the park’s popularity has grown tremendously and encouraged us to add Morgan’s Inspiration Island,” Gordon Hartman, founder of The Gordon Hartman Family Foundation, which developed the park, said in a statement.  “Now, we’ll have two attractions like none other that everyone – regardless of ability or age – can enjoy.  Morgan’s Inspiration Island promises to give individuals with physical or cognitive special needs a place where they can splash and play without barriers.”

Both parks were named after and inspired by Hartman’s 23-year-old daughter, Morgan, who lives with a disability. The Foundation also operates The Academy at Morgan’s Wonderland, a school for students with disabilities. 

The water park has been under construction since 2015, with developers working to ensure the park’s safety and accessibility. “For the past three years, we’ve been collaborating with water park consultants from Texas, Arizona, Florida and Canada as well as local doctors, special needs therapists, special education teachers, parents and caregivers,” Hartman said. “We believe Morgan’s Inspiration Island will be tremendously popular because both children and adults in wheelchairs will be able to have fun in the South Texas sun.”

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,” Hartman added. “Both were designed with special-needs individuals in mind and built for everyone’s enjoyment.”

Parkgoers with powerchairs can also access the park’s waterproof wheelchairs, powered by compressed air, in addition to two other types of waterproof wheelchairs. 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.

According to Hartman, due to the park’s popularity, those interested in visiting the park should order tickets in advance online.

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What It Takes to Parent a Child With a Disability

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Sometimes I’m asked what it’s like to have a child with a disability. I’m praised for my parenting, lauded for my patience and my ability to care for my child. While I appreciate the sentiment, the truth is I’m no more of a super mom than anyone else. I stumble, I fall, I lose my temper sometimes. I struggle to find balance and order in our family’s life and schedule. My child is not all that different from any other child, not at the core anyway. And he’s certainly not hard to love.

I am a good mom; this I know and will take credit for. But I’m not special. I wasn’t given this child because I was strong enough, or extraordinary in some way. And let’s be very clear, my child is not a burden. He’s just a person; granted an incredible one, at least in my eyes. As parents, our job is to love, to encourage, to care for, to teach, and to provide for our children. This is what I do. In many ways, my life as a parent is not much different from anyone else’s.

I don’t want to take away credit where credit is due. There are so many hardworking parents of kids with disabilities out there, and they deserve to be acknowledged for moving the mountains they move to ensure their children flourish and thrive. Being a parent takes guts, not because of the children we have, but because of the world we live in. While we have come a long way, we still have far to go in the areas of accessibility, acceptance, and inclusion. Sometimes we have to fight a lot harder to have our children’s needs met. We have to learn things we never thought we’d know how to do. We often have to work harder at the things that usually come naturally in life.

If you’ve ever wondered if you’d be able to parent a child with a disability, I believe the answer is of course you could. You don’t think about it, you just do it. You take what is in front of you, and you figure it out. All it really takes is a willingness to learn, and an open heart and mind. If you can be a good parent, you can be a good parent to a child with a disability. If you’re at the beginning of your journey in the world of disability, rest assured, you’ve got this. I’m not going to tell you it will be easy, but it will be worth it.

I’m grateful. I’m thankful that I’m lucky enough to be Mom to a special kid. The things that make him special are not the things that make him different, but the things he brings to the world; kindness, innocence, love, determination, and so much more. Being a parent to a child with a disability is hard, but it’s also really quite simple. As trite as it sounds, all you really need is love. Oh, and a little backbone, and a lot of coffee.

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Entering the World of My Child on the Autism Spectrum

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One of the worst fears as a parent many of us probably share is how to keep our children safe from harm. We might spend countless hours worrying about sickness, physical/metal/emotional harm, appointments, bullying, school and much more befalling our children. We might run around doing things for our kids, plus cooking, cleaning, grocery shopping and baths — sometimes we might even forget to take time out for us. With the million and one items on our checklist of to do’s and worrying, it is no wonder we might not take time to enjoy the little things.

We lived in Louisiana, in the deep, deep south. Copperheads reared themselves at every opportunity. At one time, the farmers’ bulls escaped ensuring, everyone stayed safe and locked up in our homes until the sheriff let us know the coast was clear. I won’t even get into the alligator farm the bank seized, leaving the alligators to fend for themselves. Needless to say, Louisiana was rich with culture and wildlife, but I worried non-stop about things that could harm my son.

I’ll never forget the day Chris taught me something about the “little things” in life. This was also the day I realized just how much worry I carried. Our two mile driveway was made from rock and stone with a natural pond that overflowed every time it rained. Outside, Chris was jumping in and out of puddles. I found such enjoyment watching him, considering not much amused my 3-year-old. I followed him back and forth, with less than a foot spacing between us. After an hour of this, my nerves were shot. I felt like I said, “Chris, please don’t,” or “Chris, be careful,” so much that if that was a song on the radio, it would have been played out.

At one point, he looked up at me with his big, brown eyes and said, “Ma, drop.” I squinted my eyes, as if that helped clarify what he was saying or helped me to hear better. He again said, “Ma drop,” but this time pointed to the ground. “Oh, you mean jump. Is that what you are trying to say, you want mommy to jump?” He smiled ear to ear and shook his head yes. Here, is where I realized, I was officially an anxious parent. No way, who knows what’s in that water? Knowing my luck, I would jump, cut my foot, bacteria would devour it, have a visit to the hospital, and be off my feet for a week. Yeah, nope. I bent down towards Chris, grabbed his little hands softly, and said, “I’m sorry, buddy, but mommy can’t do it. I don’t even want you to because I don’t want you to get hurt. But, you are having so much fun and mommy wants you to be happy.”

Chris looked down at the ground and his jump didn’t have as much pep. I had never felt so bad as a parent until that day. I bent down again to ask him what was wrong. When Chris was upset, he would get distant or mad. This was one of those times. Just jump you fool! You used to jump off buildings into pools as a kid, but you can’t jump barefoot in a puddle. Wham. I had just hit a brick wall of enlightenment. Here, my son wanted to play and all I could think about was protecting him and myself from unlikely possible harm. He took it as me not wanting to play with him and I…..well, I was being a silly parent.

We played even when the rain came. After baths, dinner and bed, the house fell silent again. In the country, when things are silent, there is almost a loneliness that befalls like a blanket softly falling over you. The term, “you can hear a pin drop,” doesn’t quite describe it. I was left to my thoughts and began rehashing the day in my mind. I imagine all my son wanted me to do was enter his world. I want him to feel accepted and understood. I believe he needed me to jump in those puddles and I hope by doing so he felt all those wonderful things. It was the smallest thing to do, compared to the everyday battles and hurdles. I was happy I entered Chris’s world. I cringed then and still do, thinking I almost didn’t because of all the “possible harm.”

I know how hard it can be to take time to enjoy the little moments. I can have many little and big things in my mind — trying to have my children adjust to certain social norms, how to teach my child this, or all the “don’t, no, wait, in a second.” I am blinded by all those things and don’t stop to try and see it through my child’s eyes. For me, it is important to enter my child’s world. No matter how unusual, off the beaten path or stressful it may seem. Later, I believe my child will be ever thankful for it.

Chris is now 9 years old. Driving in the car I asked him, “Do you feel I understand you?” He shook his head yes. “OK, next question: Do you feel accepted by me?” He shook his head yes, again. Piling out of the car, he gave me a hug. He said, “Mom, you know when I say I hate you, I really don’t. I mean, I’m mad. It’s usually because you tell me “no.” I get it, though.” I teared up then and even now, while writing this. I believe going into his world allowed him to blossom in mine.

As parents I believe it is imperative to enter our children’s world first, before pointing out all the things they need to change or think about. I think of it this way: Could I explain what chocolate ice cream tastes like if I’ve never had it before? So, how could I explain the “ins and outs” of the world to my child if I don’t know how they view it?

Follow this journey at Ronnie’s blog.

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